Lewy Body Dementia Advanced Stage End Of Life Care

Lewy Body Dementia

This post was not the easiest post we have ever put up on our site concerning lewy body dementia.

Right at the beginning when we first started this information website we made the decision that what was needed, and what carers and loved ones wanted, was the bear facts.

No matter how bitter and hard these facts are to read, people just want the hard facts, that’s why they search the internet, they want the truth.

We decided to set up this site to try and put lots of different information together in one place from all over the internet, so that you don’t have to do the searching.

We just wanted to help and make things easier, if only in a small way.

But, it’s not always easy when choosing what does, and does not go up on our site.

We have added the link to the essay below at the foot of this post.

Advanced stage and end-of-life care

Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease.

The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms.

Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.

Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress. 

Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are.

This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.

Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.

Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.

What does self-care look like?

  • Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
  • Promote your own well-being and seek balance.
  • Think of it as putting on your own “oxygen mask” on before you help others.
  • Build resilience in yourself.
  • Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
  • Connect with yourself and with others: “connection is protection.”
  • Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.

Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient.

While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.

Motor symptoms

Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain.

Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.

There are a number of strategies and techniques to manage these issues:

  • Range of motion exercises (independent or assisted) and massage to help prevent contractures
  • Skin care to ensure skin is clean and dry
  • Change positioning every 2 hours to prevent formation of pressure ulcers
  • Use a gait belt to help walk and transfer safely
  • Mechanical lifts may be needed eventually
  • Use specialized cushions or mattress to prevent pressure ulcers
  • Broda specialized positioning and mobility chairs

Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life.

The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.

If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.

Communication

In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.

Some basic tips:

  • Say “yes, and…” – do not argue, even if they are hallucinating or confused.
  • Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
  • Ask “yes” or “no” questions rather than open-ended questions.
  • Maintain eye contact.
  • Offer a reassuring response to frequently asked questions.
  • Find a place and time to talk without distractions.
  • Refer to people by their names instead of pronouns like he or she, to avoid confusion.
  • Talk about one thing at a time.
  • Have patience.
  • When giving instructions, use simple sentences – one piece of information at a time.
  • Recognize what you’re up against.
  • Understand that there will be good days and bad days.

Psychiatric symptoms

Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.

Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.

At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.

The “Five R’s” from the Family Caregiver Handbook:

  • Remain calm.
  • Respond to the person’s feelings.
  • Reassure the person.
  • Remove yourself.
  • Return when you are calm.

Eating and taking medications

Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife.

Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.

Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.

Recommendations:

  • Do not use thickeners; evidence shows they can actually worsen quality of life.
  • Try carbonated beverages.
  • Try smoothie-consistency drinks; thin liquids are most difficult.
  • Give medications with applesauce or something of a similar consistency.
  • Alternate between a bite of food and a sip of fluid.
  • Have them do a chin tuck when swallowing.
  • Benevolent trickery is sometimes necessary.

Weight loss

Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.

Toileting and incontinence

Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them.

Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection.

The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.

Dental care

It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.

Practices to avoid in advanced LBD

In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.

Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course.

Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.

Fluctuations in alertness

As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.

End-of-life care: Days to weeks

At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.

In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable.

If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.

Prognostic indicators in LBD

There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.

For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs).

These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.

For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:

  • Aspiration pneumonia
  • Pyelonephritis (kidney infection)
  • Septicemia (infection of the blood)
  • Stage 3 or 4 pressure ulcers
  • Recurrent fever
  • 10% weight loss (or greater) in the past 12 months
  • Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:
  1. Speaks 5-6 words per day
  2. Speaks only 1 word clearly per day
  3. Cannot walk without personal assistance
  4. Cannot sit up without personal assistance
  5. Can no longer hold up head independently

What do people die of in LBD?

There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal.

Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.

Hospice care: Role of the neurologist

Right now, only about 5% of patients with LBD will receive hospice services

It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.

Medications to avoid in hospice patients with LBD:

  • Haloperidol (Haldol)
  • Metoclopramide
  • Phenergan

Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.

The Advance Healthcare Directive is a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.

Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.

Stanford PD Community Blog

Lewy Body Dementia

Lewy Body Dementia
Lewy Body Dementia

Please help us to help others, spread the word and share our link for Lewy Body Dementia UK.

Without your help and support we can do very little apart from being just another website on the internet, reaching very few people who may need information and help.

But with your help, then others who also really need support too can benefit who may not even know we exist.

You can help us to help others, by sharing our link upon your social network platforms or by bookmarking us to share later.

If we can reach just one person or family suffering at this time, then we have succeeded in our aim and purpose, but we would like to reach so many more than just one.

We thank you deeply and sincerely.

We do put a lot of work and time voluntary into this site gathering information to try and help others, but without your help and support we are nothing but a clanging cymbol, ignored and forgotten.

Dementia with Lewy bodies (DLB) is the second most common form of neurodegenerative dementia in older adults.

To be diagnosed, patients will present with dementia in addition to at least two of the following core symptoms: fluctuating cognition, recurrent visual hallucinations, REM sleep behavior disorder, and/or parkinsonism.

Recommended treatment strategies focus on providing symptomatic relief; there is no FDA-approved medication to treat DLB. Pharmacists can help prevent hospitalizations and resultant morbidity by ensuring that patients do not take medications known to exacerbate fall risk and worsen cognitive deficits.

Broadly defined, neurodegenerative dementia is a progressive cognitive decline that adversely and markedly impairs the patient’s overall functionality.1 Dementia with Lewy bodies (DLB) accounts for only 10% to 20% of total dementia diagnoses, but its economic and societal costs are nonetheless burdensome.

Patients with DLB incur higher healthcare costs, have longer hospitalizations, report lower quality of life, and have caregivers with higher levels of distress when compared with patients with Alzheimer disease (AD).

There is no FDA-approved medication to halt the progression of cognitive decline in DLB, which may progress more rapidly than in other dementias.4 Current treatment strategies that focus on symptomatic control provide modest benefit.

Lewy body disease (LBD) is characterized by the presence of Lewy bodies (LBs) and Lewy neurites and comprises a diagnostic spectrum that includes Parkinson’s disease (PD), PD with dementia, and dementia with LBs.

LBs and Lewy neurites are insoluble aggregates composed mainly of phosphorylated α‐synuclein and can be widely distributed throughout the central and peripheral nervous systems.

The distribution of LBs may determine the LBD phenotype. Braak hypothesized that Lewy pathology progresses ascendingly from the peripheral nervous system to the olfactory bulbs and brainstem and then to other brain regions. Braak’s PD staging suggests that LBD is a prion‐like disease. Most typical PD cases fit with Braak’s PD staging, but the scheme fails in some cases.

Alzheimer’s disease, progressive supranuclear palsy, corticobasal syndrome, multiple system atrophy, frontotemporal lobar degeneration, Creutzfeldt–Jakob disease, cerebrovascular diseases, and essential tremor are common misdiagnoses for pathologically confirmed LBD. LBD exhibits considerable heterogeneity in both clinical and pathological settings, which makes clinical diagnosis challenging.

In 1817, Parkinson described the clinical features of six cases of the disease named after him.1 In 1980, Kosaka et al. proposed the term Lewy body disease (LBD).2 In 1996, the first consensus guideline on dementia with Lewy bodies was published.

LBD is a disease concept characterized by the presence of Lewy bodies (LBs) and Lewy neurites and includes Parkinson’s disease (PD), Parkinson’s disease with dementia (PDD), and dementia with Lewy bodies (DLB).

The phenotypes of PD and DLB emphasize motor abnormalities and dementia, respectively (Fig. 1). The clinical phenotype of LBD may be determined by the anatomical distribution of LBs rather than by the severity of Lewy pathology.

The major component of LBs and Lewy neurites is phosphorylated α‐synuclein, LBDs are classified as α‐synucleinopathies.

The Cruel LBD: Lewy Body Dementia

NIH Medline Plus

Randal G. was always a strong public speaker.

“I was a person used to giving an hour-long presentation to 400 people with minimal notes. Everything flowed,” Randal says.

But in 2011, when he was 55 years old, something changed. During a speech for his consulting business, he couldn’t find the right words to say. He also couldn’t keep track of a project he was leading for work, which wasn’t like him.

It turns out, these were early signs of Lewy body dementia (LBD). The disease causes people to forget things, lose their balance, and have trouble moving and thinking. Over time, it causes serious mental and physical decline.

More signs

In the following months, Randal and his wife, Lisa, noticed more changes.

He had tremors in his hands that he couldn’t control. He forgot how to do everyday things.

When Lisa’s car had a flat tire, she called Randal, her go-to car guru. But he didn’t know how to help.

“It was a real shock, and I had a bit of anger, because I felt let down,” she says. Was depression causing him to lose focus at work? Were the tremors a sign of Parkinson’s disease?

As his symptoms worsened in 2013, Randal and Lisa went to his primary care doctor to find out what was wrong. He ended up visiting three different doctors over eight months before he was diagnosed.

Treatment for LBD

Randal now takes medications to control the tremors in his hands and to slow the disease’s effects on his thinking and concentration.

He also goes to physical therapy regularly, which helps with his balance. He gets massage therapy and Botox injections for muscle tightness in his legs.

To help him solve everyday problems, like using a computer mouse or eating, Randal sees an occupational therapist.

Life with LBD

Randal and Lisa say it’s been a challenge coping with Lewy body dementia. The symptoms get worse, but not in a predictable way.

“Active doesn’t have to mean physically active. What is most important is that you are doing something and you can feel like you are valuable.”- Lisa G.

“Some days I can load and unload the dishwasher with no problem at all,” Randal says. “But some days I can deal with the bowls and the silverware, but can’t deal with other things”

Those kinds of ups and downs are hard for a person with Lewy body dementia.

“I believe it’s also difficult for the caregiver,” Randal says.

One way Randal copes with LBD is by staying active.

For several years, he volunteered two days a week in a community garden. He also helped farmers set up their booths at a local farmer’s market.

For people who think they might have LBD, Lisa recommends that their loved ones take detailed notes of behavior and other changes, as well as the dates they happen. She says it helped with her husband’s diagnosis.

Helping others

Another way that Randal copes is helping other people with Lewy body dementia.

He volunteers for medical studies and undergoes regular MRIs and other tests to help expand researchers’ knowledge about the disease. Randal also participates in online and in-person support groups.

Randal and Lisa have shared their experiences with members of the LBD community and the Lewy Body Dementia Association, a nonprofit organization established to support people with LBD and their families, increase public awareness, and raise money for research.

Their advice for other families with LBD is to try and work around your changing symptoms, as hard as it may be, and ask for help when you need it. Staying active is also key.

“Active doesn’t have to mean physically active, or leaving your home,” Lisa says. “It can be, but the situation changes with the disease. What is most important is that you are doing something and you can feel like you are valuable.”


5 patient tips for coping with Lewy body dementia

Randal G. shared lessons to help others adjust to life with Lewy body dementia. His tips have been edited for space.

  1. Find ways to work around changing symptoms. Living with LBD means that as soon as you settle into a new normal, the sand will shift under your feet. You will find new or worsening symptoms and you will have to find a new normal. It will be frustrating. It will be painful. It will be hard. But it helps to remember that there are people available to help you.
  2. Try to be active and social. Staying active and participating in hobbies you love can help you feel more like yourself. Look for activities that include other people. There are many online and in-person support groups and volunteer groups where you can contribute and meet others. Try to find something that helps someone else.
  3. It’s OK to ask for help. In fact, it is better to accept help from everyone you care about sooner rather than later. A wise man once taught me that for everyone who wants to give help, there has to be someone to receive it. Now it’s our turn to receive.
  4. Give space. There will be some friends or people who, for their own reasons, can’t handle your new reality. Try to forgive them.
  5. Welcome new friends. There are also people who can embrace your new reality, such as people you meet in support groups. Embrace their kindness with gratitude.

Lewy Body Dementia: The Fightback Begins USA UK

USA Lewy Body Dementia

Please help us to help others, spread the word and share our link for Lewy Body Dementia UK.

Without your help and support we can do very little apart from being just another website on the internet, reaching very few people who may need information and help.

But with your help, then others who also really need support too can benefit who may not even know we exist.

You can help us to help others, by sharing our link upon your social network platforms or by bookmarking us to share later.

If we can reach just one person or family suffering at this time, then we have succeeded in our aim and purpose, but we would like to reach so many more than just one.

We thank you deeply and sincerely. We do put a lot of time and work voluntary into this site gathering information to try and help others, but without your help and support we are nothing but a clanging symbol, ignored and forgotten.

LEWY BODY DEMENTIA

Lewy body dementia causes a progressive decline in mental abilities.

People with Lewy body dementia may experience visual hallucinations, and changes in alertness and attention.

Lewy body dementia is a progressive illness with no known cure. 

Dementia affects millions of Americans and hundreds of thousands of British People.

There are several types of dementia that we know of, including Alzheimer’s Disease and Lewy Body Dementia.

While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.

If you or someone you know may be in the early stages of dementia, here’s what you need to know about its seven stages:

STAGE ONE: NO COGNITIVE DECLINE

Stage one is entirely undetectable to the patient, loved ones, and physicians. At this stage, individuals do not experience or present with any cognitive decline.

STAGE TWO: VERY MILD COGNITIVE DECLINE

Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, it’s difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.

STAGE THREE: MILD COGNITIVE DECLINE

Stage three involves mild cognitive decline. The symptoms may become more noticeable to loved ones of the individual in stage three dementia, and a diagnosis may be near. This stage often includes mild memory loss, out of character forgetfulness, and a slightly decreased ability to concentrate.

STAGE FOUR: MODERATE COGNITIVE DECLINE

Many people living with dementia are officially diagnosed during stage four, which is when physicians are able to pinpoint cognitive decline with an exam. At this point, the patient will likely present symptoms such as life-disrupting forgetfulness and out-of-character difficulty performing daily responsibilities. It may become more challenging for those with stage four dementia to manage finances or navigate to new locations.

STAGE FIVE: MODERATELY SEVERE COGNITIVE DECLINE

Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.

STAGE SIX: SEVERE COGNITIVE DECLINE

Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.

STAGE SEVEN: VERY SEVERE COGNITIVE DECLINE

Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with life’s activities, and often need round the clock support.

Dementia affects approximately 5 million Americans each year. Lewy Body Dementia (LBD) comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If you’d like to learn more about Lewy Body Dementia then please feel free to browse our website.

FIVE APPROXIMATE STAGES LEWY BODY DEMENTIA

PHASE I POSSIBILITIES

Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny

Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking) · Increased daytime sleep – two+ hours · Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems · Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean) · Chronic runny nose · Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness · Short-term memory loss but able to hide (mask) symptoms or engage in show time · Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression · Able to engage independently in leisure activities · Handwriting is affected; impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised

PHASE II POSSIBILITIES

Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

 Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance · Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation ·Parkinson’s symptoms may be controlled with medication ·Increased difficulty in:

Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances

May be able to administer own medications. · Able to follow content of most conversations · Able to be left unsupervised for two or more hours · Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated

PHASE III POSSIBILITIES

Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.

Ambulation/transfers are impaired, needs assistance with some portion of movement · At risk for falls; increase of Parkinsonism symptoms · Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week) · Needs assistance/supervision with most ADLs; may require DME · Speech becomes impaired, projection (volume) may decrease · Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language · Able to be left unsupervised less than one hour but unable to work or drive · Unable to administer medication without supervision· Unable to organize or participate in leisure activities ·Inability to tell time or comprehend time passing · Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome · Severity of symptoms may increase or decrease

PHASE IV POSSIBILITIES

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair ·Needs assistance with all ADLs; requires 24-hour supervision · Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel · Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses · Parkinson’s symptoms need regular medical monitoring · Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling · Increased daytime sleeping · Hallucinations prevalent but less troublesome

PHASE V POSSIBILITIES

Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.

Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning · High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever · Difficulty swallowing with possible decision for feeding tube necessary · Muscle contractions – hands, legs, arms; lean to either side very pronounced · May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast ·Unable to follow simple commands; decreased or no language skills · Constant delusions · Fluctuations less frequent and more severe

Simple Checklist for Lewy Body Dementia Diagnosis

How many of the following have occurred at least three times over the past six months?

1. Slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Loss of postural stability (balance) with or without frequent falls?
4. Tremor at rest in any of the 4 extremities or head?
5. Excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Episodes of illogical thinking or incoherent, random thoughts?
7. Frequent staring spells or periods of blank looks?
8. Visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?

Total how many of the above 10 items occurred at least three times during the past six months. If the total is three or more, there is a very high likelihood of the presence of Lewy Bodies. Discuss the results with your medical specialist.

Lewy Body Dementia: The Shocking Truth LBD & Alzheimer’s

Lewy Body Dementia

Personal Testimony Lewy Body Dementia Jean Rough

Knowing that I have both Alzheimer’s and Lewy Body disease, I found myself interested in what I could learn.

In my search, I discovered Dave Itzkoff who wrote a book about Robin Williams.

Robin Williams, the actor, had Lewy body dementia (LBD) but it was not discovered until an autopsy after his death. Itzkoff learned about Robin’s symptoms mostly from Robin’s wife Susan.

I learned from Dave. Itzkoff’s book was a BIG breakthrough for me.

As I read about how much Robin suffered, I felt my own suffering. I no longer was alone.

For instance, he and I had the frustration of not knowing if a LBD symptom is leaving, arriving, or returning.

No way to prepare. And no way for caregivers to prepare.

Robin’s wife and others tried everything to stop a symptom but nothing would work. His body had its own time. And so does mine. 

Here is the “endless parade of symptoms” that Robin went through, mostly in his last year of life. It shocked me that his symptoms were so similar to my own symptoms. 

** anesthesia 

** severe loss of weight 

** loss of sense of smell 

** heartburn 

** tremor in left hand 

** less voice 

** stomach cramps 

** constipation 

** trouble seeing 

** cogwheel rigidity (limb stops itself) 

** stooped posture  

** “freeze” current motion 

** anxiety (off the chart) 

** thinner and frail 

** moments of quiet; moments of crying 

** motor impairments

** difficulty remembering 

** indigestion

**Hallucinations are not mentioned in Robin’s list, but they have been important for me

For each symptom there is a story. I have been keeping a journal for my stories. For example, four years ago I was changing my niece’s diaper. In cleaning it up, I noticed that I was not smelling it.

That night at dinner with my husband and my 90 year old father I asked them to smell with eyes closed. They could smell. I could not. At the moment Lewy body Dementia was not a part of my life. But last year I realized that it was most likely due to Lewy. And I still can’t smell. 

Another all time experience is that my weight was around 124 lbs in 2014 and now is about 97. No matter what and when I eat, my body is not responding. Of course there are many Lewy symptoms that appear and then disappear.

This was true with my rheumatoid arthritis. It lasted for a couple of years and then disappeared. Please note that RA does not usually disappear! 

How did this begin for me?

Four years ago, at least, I began noticing that I was being different, such as trouble with words. I took one of those tests and did fairly well making a clock, knowing where I lived, and remembering the three animals proposed to me when I arrived. A doctor did an X-ray and said it was fine with slight mild cognitive impairment (MCI). 

Two years later those small mistakes and thoughts on the tests had shifted. My husband Jim and I decided to attend an event in Seattle focused on Alzheimer’s with Dr. Tom Grabowski who is Director of UW Medicine Memory and Brain Wellness Center.

After attending one of his private sessions and taking a MRI, we were ready to hear the news. Later Dr. Grabowski suggested that I bring someone who could be a caregiver. I decided to bring Jim my husband and our son Dan and his wife Bonnie. 

As we were preparing to leave our home in Port Townsend for our session, I remembered that I had that X-ray from the years before. But where would it be in our home after all of these years! I gave it one possibility, in my husband’s closet pushed way back. I went into the closet and there it was! We took the X-ray with us to Seattle. It was a good choice because it gave Tom enough to measure and see a few differences.

At the Memory and Brain Wellness Center, Dr. Grabowski asked lots of questions. He also shared what he saw on the MRI. It was hard for me to see what clearly was OK and what was not. It was very important to include our caregivers. They asked good questions and now I have better knowledge of what I can expect.

Another Memory and Brain Wellness Center event was held a month ago with the focus on Lewy body dementia. I was impressed how well the organizers allowed time to share and to hear other stories as well as professionals that shared. And two of my caregivers attended by taking off of work (and picking me up at the ferry!). They had the chance to learn more about Lewy. We hope that the Center will offer more events. 

What It’s Like to have LBD

A friend asked me what is it like to “have” LBD. The image that comes to my mind is a ferris wheel except you don’t know when it will start or stop. What helps me is to be conscious about how I feel each day. If it is something a bit unusual, then see if it is in the LBD list or maybe something new for the list appears. And give yourself a moment to relax or take a walk knowing that this event will pass. In the meantime, check to see if you need to inform your caregivers in preparation for the ups and downs. 

I’m Cleaning! 

Recently I cleaned our dishwasher. Then I brought my cleaning stuff to the bathroom. I noticed that there was lots of dust on the floor behind the toilet. Obviously it had not been cleaned for a while. I got down on my knees and cleaned. Then I noticed the wall had some spots, and another wall to clean. I cleaned them.

I was in the midst of the next wall when I suddenly realized something. I stopped and screamed with a huge smile: “I’m cleaning! I’m cleaning!” Something was released that had been locked up along with LBD. The “locked up” had been keeping me safe. I could only face so much at the time of my life. But the “doing the cleaning” released me. That is how great I feel!

Driving my car

Something else I notice. If I share with someone about a problem, such as forgetting where they put things or getting lost when driving their car, their response often is: “I know what you mean. That happens to me all the time.” Yes, that is true as how she/he experienced it. However, there is this different kind of loss. My car loss situation shortens my thinking. For instance I might not think to call “Siri.” My friend with getting lost with a car has the choice to think and perhaps check with Siri. 

Recently I was driving my car and pulled out from our hospital to a larger street. My destination was to turn left to a grocery store. It looked clear. When I looked to the right two cars were coming. Knowing the left was clear I moved out but the left was not clear. I had to make a quick choice. In the moment, turning a bit fast to the left seemed the best choice.

I gave the car a quick move and made it. But it only worked because the car to the right slowed down. As I drove away I hoped the driver would follow me so I could apologize. He did pull in right next to me. I walked over and apologized. He happened to be someone I knew and was mayor of our town for years. We talked about the almost crash. We knew that all of us were over 72.  I shared that I had Alzheimer’s and Lewy. And that Dr. Grabowski had mentioned that I should consider not driving. Now I know why. 

Two weeks later I was driving to pick up my great niece and take her to a friend’s house. An easy task. However I made a wrong turn and had no Idea where to drive. It was like being in a swirl from street to street, with little thinking. Finally I found a way to get out of the swirl and finish my task with the car.

That night Jim and I talked about our choices. It hit us hard. How could we manage without my driving? It would be far more difficult for both of us. But as we talked we remembered Tom’s words. And we remembered two other events in Seattle that would follow in as Lewy. And we talked about our grandchildren. This is our first week with Jim driving me to someplace. I am riding my bike more often. 

Hallucinations 

I saw Jim walk by with morning light under the doorway while I was lying on my bed. I called out to have him join me. But he doesn’t hear me. As I am watching the door, I now see these crazy looking creatures, very small, parade under the door going in a perfect line, the opposite than what Jim was doing. I smile and speak to the creatures. Soon I realize that I have been in a visual hallucination, once again.

Finding Help 

We have someone who helps with cleaning, gardens, and paying bills. But there is no one who helps with our daily living. As simple as keeping our calendar up to date. It can no longer be me. Small tears come. We begin to consider our options, such as having someone who stays during the day. Or how later could sleep where.

There is some laughter as to how we could sleep. But mostly we are caught into a maze that has no way out. As if we have hit ground. The reality is that we have a long way to go. Maybe it is closer than we think. The thought is scary, sometimes more so for Jim than me.

COVID‐19 Coronavirus Lewy Body Dementia DLB Family Caregivers Care Homes

Lewy Body Dementia

Key points

  • The physical, cognitive and neuropsychiatric challenges associated with dementia with Lewy bodies make people particularly vulnerable to COVID‐19.

  • Adverse effects may also occur from social isolation, the under‐treatment of existing DLB related symptoms/problems and the negative impact on caregivers.

  • A vigilant multi‐disciplinary approach is needed to meet the health and psychosocial needs of people with DLB and support family caregivers.

During the current SARS‐CoV‐2 pandemic dementia has been identified as disproportionally common in adults aged over 65 who develop severe COVID‐19. 1 

Observational data from the International Severe Acute Respiratory and Emerging Infections Consortium also confirms a high prevalence of dementia in older adults hospitalised with COVID‐19. 2 

It is so far unclear whether there is any direct effect of dementia pathologies as dementia is a disease of old age, and thus likely to be associated with a variety of comorbidities, in particular, frailty, which may further exacerbate the risk of severe infection.

In addition up to one third of COVID patients have demonstrated neurological sequelae 3 and there may be both direct (viral infection within the brain, vascular effects) and indirect effects (eg, host immunological response, impact of treatment) of SARS‐CoV‐2 on the brain. 4 

It is therefore possible that SARS‐CoV‐2 infection may accentuate any pre‐existing neurodegenerative disease.

Dementia with Lewy bodies (DLB) represents at least 4.2% of community‐based dementia, and 7.5% of cases in clinical dementia populations. 5 

Under‐diagnosis is however common, meaning the true figure is likely to be higher. 6 This form of dementia presents with several distinct cognitive, neuropsychiatric, sleep, autonomic and motor symptoms.

These include spontaneous alterations in concentration and attention, recurrent well‐formed visual hallucinations, and rapid eye movement (REM) sleep behaviour disorder.

Further problems relate to severe autonomic dysfunction (eg, severe constipation, orthostatic hypotension, and urinary difficulties), and spontaneous features of Parkinsonism, including gait impairment. 7 

People with DLB are admitted to hospital more frequently, and utilize inpatient care to a substantially higher degree, than people with Alzheimer’s disease (AD) or the general elderly population. 8 

They also have higher and earlier mortality than people with other dementias. 9 10

The myriad of symptoms associated with DLB results in a complex condition with significant functional disability and a likely vulnerability to COVID‐19. Furthermore, DLB patients may be biased against in treatment decision algorithms that consider multimorbidity, particularly for critical care access.

For example within the UK, the current NICE guidance on critical care for COVID‐19 algorithm (https://www.nice.org.uk/guidance/NG159) uses the Clinical Frailty Scale, whereby a higher category of frailty reduces the likelihood of receiving critical care.

On a measure of this type, it is probable that people with DLB would score highly as a consequence of both their physical and their cognitive problems.

As the current wave of COVID‐19 recedes and jurisdictions move to staged social distancing, people with DLB may need to remain shielded longer than some other groups due to their susceptibility and age profile. Even where a person with DLB avoids developing COVID‐19 and hospitalisation, adverse outcomes may result from this period of enforced social isolation.

People with DLB invariably have their healthcare needs managed by professionals from a wide variety of specialties, including doctors (primary care, psychiatrists, neurologists, geriatricians), nurses, psychologists, occupational therapists, pharmacists, carers, social workers and physiotherapists, in addition to benefiting from the support of charities and community groups.

This raises a particular challenge as shielding or social isolation risks at least some healthcare and psychosocial needs remaining unmet.

One feature of DLB is an increased risk of infection, notably bronchopneumonia. 11 

This is particularly concerning during the current pandemic, where it might exacerbate, or be mistaken for COVID‐19 symptoms. Secondary pneumonias may be more common given that people with DLB often have a pharyngeal‐type dysfunction, which results in a high prevalence of silent aspiration. 12 

This could contribute to diagnostic difficulty especially in conjunction with anosmia, another symptom commonly associated with DLB, 13 and which is also indicative of COVID‐19.

In common with other dementias, a person with DLB may fail to notice or report symptoms, of, for example, fever, which may indicate COVID‐19 or another infection.

Furthermore, coupled with a reduction in the availability of face‐to‐face healthcare provision, infections may progress significantly before detection.

Family caregivers are important partners in detecting changes in normal behaviour, which may indicate a developing illness. However, they may need guidance in asking appropriate questions particularly where they are living apart and maintaining contact by phone.

In the UK ‘Telemedicine’ is replacing many face‐to face consultations during the current pandemic and is being viewed as a potential longer‐term alternative for primary care. 14 

In addition to age related hearing/visual impairment, people with DLB may find this form of communication particularly challenging to navigate especially when they are feeling unwell.

They have significantly more visual complaints when compared to people with AD, including misjudging objects, difficulty reading, and increased double vision 15 and thus could struggle to interact with the virtual medium.

Language dysfunction is more severe in DLB than other dementias and includes impairments of speech fluency, speech freezing, reduced pitch range and hypophonia. 16 17 

This may lead to problems in both responding to on‐screen questions and being understood. Such challenges need consideration when transforming services to ensure equality of access.

People with DLB are at increased risk of developing delirium if they develop an infection compared with AD. 18 As infection progresses in severity, treatment becomes more difficult and the risk of delirium and hospitalisation increases.

The maintenance of good general hygiene is therefore important to reinforce, for example, where there are continence difficulties, as urinary tract infections can escalate quickly.

It is also vital that family caregivers understand the importance of the early assessment of suspected infections by a health care professional.

This could include reassurance that perceived pressures on healthcare staff and concerns about overburdening services do not warrant any delay in seeking help. It is important that caregivers inform health care professionals of the DLB diagnosis in any communication.

This will highlight to them the need for caution when prescribing anti‐psychotic medication due to the risk of a severe sensitivity syndrome. 19 

Families can assist healthcare professionals to differentiate between fluctuations commonly experienced by their family member and unfamiliar behaviour that may indicate delirium.

Avoiding unnecessary hospital admissions is important, as the change of environment and routine are likely to increase confusion in people with DLB.

They may feel particularly isolated if visiting is restricted and they are unable to manage phone contact. It may be advisable for family caregivers to consider in advance whether the person with DLB is sufficiently cognitively aware to express their wishes or preferences regarding any future hospital admission or treatment.

People with DLB may have difficulty in understanding and following instructions regarding the importance of good hand hygiene in reducing the risk of COVID‐19 transmission.

Clear, straightforward explanations are key, with frequent repetition as needed. Signs or pictures can be attached above sinks to act as prompts, and caregivers can model good hand washing practice, and give positive reinforcement of successful performance.

If the care‐recipient is reluctant, sitting with a bowl of water rather than standing at the sink or incorporating a hand massage may be welcomed.

With appropriate signposting, less cognitively impaired people with DLB may be able to access videos demonstrating hand washing techniques.

Other physical symptoms of concern include orthostatic hypotension. This is more common in DLB than other dementias with a greater reduction in systolic blood pressure and a more prolonged period of orthostasis. 20 

This may increase the risk of falls, which is also higher for people with DLB than for other dementias. 21 

This possibility is exacerbated by poor hydration, a potential concern if people are missing the usual prompts from family caregivers.

Good hydration can be maintained through reminders by phone, sharing drinks virtually during video calls or alarms set at regular intervals.

If there is a risk of falls going undetected, families may need guidance to assess the relative risks of visiting rather than remaining physically distant.

Healthcare professionals should be willing to support families in assessing these risks and helping them reach decisions about the most appropriate level of contact. This should take into account both national guidance and the needs of the individual with DLB.

Many people with DLB take short daily walks or participate in low‐level exercise classes offered by gyms or day centres.

Regular exercise can interrupt the trajectory of frailty, limitations in mobility, stiffness and sarcopenia, often evident in DLB. Benefits include improvements in gait speed and in the daily activities subsection of the UPDRS. 22 

While the exercise capacity of people with DLB is relatively low in comparison with other cohorts with dementia, any reduction may heighten the falls risk.

Maintaining safe home‐based activities, for example, by following appropriate on‐line fitness programmes, in many cases with assistance, may reduce the impact of the lost exercise opportunities and minimise skeletal or muscular pain from reduced mobility.

2.1. Cognitive and neuropsychiatric challenges

A lack of meaningful activity adversely affects quality of life in people with dementia, 23 and people with DLB benefit from cognitively stimulating activities. 24 

They may find the sudden loss of these and the changes to their daily routine necessitated in response to COVID‐19 difficult to comprehend.

They may also struggle to understand the need for social isolation, and misinterpret the reason for the lack of visits from family and friends. People with DLB may react with anxiety, anger, stress, or withdrawal in response to worry they perceive in others, or news events about which they have limited understanding.

Caregivers can assist by sharing simple non‐threatening messages about COVID‐19, emphasising the temporary nature of the situation, and reassuring the person with DLB of their continued importance to them despite their physical absence.

Frequent, brief communication is probably of more value than extended contact where concentration may be difficult to sustain, especially over unfamiliar media platforms.

Non‐pharmacological treatment modalities are recommended to manage behavioural disturbance in people with dementia. 25 26 

This is particularly salient given that delivering face‐to‐face or group non‐pharmacological interventions to reduce agitation, for example, music therapy or sensory stimulation, 27 may be impossible due to the difficulties in maintaining social distancing.

Any resurgence or development of behavioural difficulties may therefore require pharmacological interventions, and caregivers should be alert to the need to discuss concerns and treatment options with health care professionals.

Depression or low mood are common features of DLB 28 with depression more frequent than in AD. 29 Depressive symptoms also differ between DLB and AD with apathy and pervasive anhedonia significantly higher in people with DLB. 30 

Apathy often responds to stimulation from social activities and in the absence of these, is important to find alternatives, for example assisting with household tasks, baking or straightforward games.

Family caregivers can be encouraged to offer managed choices to reduce any perceived loss of control over how the day is spent.

If the person with DLB lives alone and seems disinclined to initiate available activities such as jigsaws, crafts or gardening, caregivers can be encouraged to prompt, enthuse and encourage via any accessible communication routes.

Resources to enhance activities can be ordered online and depending on the level of impairment, turn‐taking activities may be possible via video calls to maintain engagement.

Family caregivers should be advised to contact a health care professional if they detect a deterioration in mood as changes to medication may be warranted.

Reduced social stimulation, a lack of daytime routine, and less physical activity may exacerbate excessive daytime somnolence, a common feature of DLB, 31 and result in poorer night‐time sleep.

Where COVID‐19 guidelines permit, outside exercise can help to regulate this.

If the person with DLB is safe to go out alone or accompanied, and compliant with social distancing, a daily walk offers the benefits of both physical exercise and exposure to daylight for melatonin synthesis.

Psychological benefits include adding variety to the day, the stimulation of different surroundings and the opportunity to engage at an appropriate distance with passers‐by.

Where the weather and circumstances allow, sitting in the garden or at an open front door while maintaining social distancing may also be worthwhile.

Recurrent complex visual hallucinations are a common feature of DLB. They cause significant distress in around 50% of people who experience them, with fear and anger being the most common responses. 32 

They tend to occur in the same location, which is most often within the house, frequently the living room or looking out of the window. 33 

Worsening of visual hallucinations, often coupled with increasing confusion might herald an undiagnosed delirium or infection.

However while this possibility should be excluded, hallucinations may also increase in frequency and intensity with more time spent at home and in the rooms where they are typically experienced, particularly where combined with social isolation and reduced sensory input and stimulation from others.

People with DLB and caregivers should be alerted to this, and where the hallucinations are causing distress, be given the opportunity to discuss the range of treatment options.

Guidelines include both pharmacological and non‐pharmacological strategies 30 and caregivers can be advised to try distraction, reassurance and bright lighting to try to minimise the occurrence.

Rearranging the furniture to alter the location of any items causing misperceptions may help, as can trying to ensure that any corrective lenses, are clean, easily accessible and worn.

Delusions, another common feature of DLB may also increase as a result of anxiety or agitation, perhaps in conjunction with overheard or poorly understood conversations, or news reports that include unfamiliar scenes, such as people wearing personal protective equipment (PPE).

Family caregivers can be encouraged to balance their own need to keep informed with protecting the care‐recipient to avoid triggering or reinforcing this behaviour.

Including collateral information from family caregivers in the clinical assessment of neuropsychiatric symptoms is essential to diagnosis and management because people with DLB frequently lack insight regarding the extent of their impairment. 34 

It is important to find ways to facilitate this into telemedicine consultations even when caregivers live physically distant from the care‐recipient.

Many people with DLB incorporate what is on the screen into their delusions and the absence of the usual cues of surroundings, equipment or uniforms to make them aware they are talking to a health care professional may cause confusion and present an added challenge.

2.2. Challenges for family caregivers

Supporting someone with DLB poses a substantial burden on family caregivers. Compared with AD, caregiver burden in family caregivers of people with DLB is rated 30% higher on the Relative Stress Scale 35 and a major depressive disorder in the caregiver is significantly more likely. 36 

The COVID‐19 pandemic is likely to create multiple further difficulties.

Physical outcomes may include caregiver fatigue from the increased hours spent supporting the person with DLB with the everyday activities of living, particularly in spousal caregivers who may have age related physical limitations.

Additional personal care needs may arise where formal caregivers are unable to visit and routine appointments such as podiatry are unavailable.

Many families rely on respite from day centres or short‐term care home admission to reduce care giving hours and care demands to a manageable level.

The closure of these removes the opportunity for caregivers to ‘recharge’ and requires them to be constantly available. This may be particularly difficult where there is no foreseeable end in sight.

Mental health challenges for caregivers include managing their own anxiety and coping with uncertainty, including over the duration of isolation, whilst containing anxiety in their care‐recipient.

Finding ways to accommodate changes to dietary preferences in the face of shortages in essential food items may be stressful.

Difficulty obtaining regular prescriptions and appointments such as physiotherapy to maintain mobility may also be concerning for caregivers who are likely to be aware of the detrimental effects of being without these.

Feelings of anticipatory grief related to a DLB diagnosis contribute to caregiver burden 37 and may be heightened by anxiety about their family member contracting COVID‐19.

Caregivers with co‐morbidities which put them in a high‐risk group, may worry about becoming ill themselves, and miss the companionship and emotional support of friends and family while socially isolated.

They may experience poor sleep as a result of their own anxieties and disturbed sleep in the care‐recipient.

Finally caregivers may be disturbed by insensitive media coverage regarding access to critical care, unsure whether or how to undertake advance care planning conversations and nervous about taking responsibility for best interest decisions.

Where the person with DLB is in a care home, caregivers may be distressed by the lack of visiting opportunities and the effect of this on the care‐recipient. They may fear the spread of COVID‐19 from other residents and experience a lack of purpose without their normal visiting routine.

Both caregiver and care‐recipient may find the lack of physical touch through being unable to hug or hand hold difficult to manage.

Sending in personal items such as photographs, familiar scent worn by the caregiver or playlists may provide some comfort.

It is essential that caregivers of people with DLB feel well supported to enable them to maintain their caregiving role during the COVID‐19 crisis, and health and social care professionals can be sources of both practical and emotional support.

Guidelines such as the UK Royal College of Psychiatrists Standards for Memory Services 38 recommend that caregivers receive a person‐centred service that takes into account their unique and changing personal, psychosocial and physical needs.

This includes offering individual time with staff to discuss their own needs.

Wellbeing checks instigated by telephone or video call through clinical services such as memory clinics should therefore include caregivers’ needs in their assessments.

Suggestions to caregivers may include trying to concentrate on those things they can control, that is, making a contingency plan for if they get ill, keeping up good nutrition, and maintaining a daily routine rather than focussing on situations that they cannot control.

This may include limiting the time spent watching news updates.

They may be encouraged to consider how they have coped with previous challenging situations and whether they can adopt similar techniques again.

Practical solutions to pressing problems such as arranging volunteer shoppers and medication deliveries may be as important as offering psychological support.

Detrimental effects for caregivers may also be reduced through maintaining contact with their informal social networks, bearing in mind that where platforms such as video calls are unfamiliar, additional support may be needed.

Carers’ organisations and faith groups may be beneficial as may opportunities to ‘buddy’ other caregivers and so offer as well as receive support.

Accessing DLB specific advice and information from charities such as the Lewy Body Dementia Association (https://lbda.org) and the Lewy Body Society (https://lewybody.org) can also be encouraged.

2.3. Challenges for primary care/generalist services

During the urgent restructuring in response to COVID‐19, specialist services in hospital‐based clinics were suspended, and many people with DLB only had access to primary care.

Although some services were subsequently reinstated as telephone or video consultations, this highlights an important concern about how primary care teams can access specialist advice and feel equipped to provide proxy specialist care when the need arises.

Establishing links between health care professionals in these areas is vital to enable case discussions and requests for urgent reviews to take place, and to facilitate sharing of current practice. This could include distributing details of updated working arrangements and contact details in situations where normal services are undeliverable.

There are other routes by which generalist and primary care services can access information on the best management and care of people with DLB. Many countries employ dementia nurses and they are increasingly taking on proactive roles in the advising on the management of dementia in community settings.

In the UK, the first Admiral Nurse specifically for Lewy body dementias has recently been appointed 39 with a remit that includes supporting health care professionals through telephone advice and the development of training material.

A further source of DLB specific information for primary care and generalist services is available via the UK National Institute for Health Research (NIHR) funded Diamond Lewy website https://research.ncl.ac.uk/diamondlewy/.

The Diamond Lewy study aimed to improve the diagnosis and management of Lewy body dementia including DLB. Freely downloadable resources include assessments for recognising and diagnosing DLB and summary sheets and detailed recommendations for managing key symptoms.

These align with the most recent Consensus Report of the DLB consortium on the diagnosis and management of DLB. 40 41 They are ideally placed to guide health care professionals having undergone piloting and feasibility testing, and been evaluated as acceptable by clinicians working in general dementia services. 42

3. CONCLUSION

While the effects of COVID‐19 are widespread, it is important to recognise the challenges presented by the significant vulnerabilities associated with DLB.

There is a pressing need for research to study the impact of COVID‐19 on this population including ensuring that people with DLB are not excluded from studies because of their age, shielding protocols or their dementia diagnosis.

Utilising the person‐centred, problem‐solving approach highlighted here including recognition of the value of a multidisciplinary response can mitigate some of the adverse effects of COVID‐19.

This should enable people with DLB and family caregivers to have their health and psychosocial care needs met in the short term, and develop resilience to withstand future COVID‐19 related challenges.

Dementia Facts: Everything You Need To Know About Dementia

All types of dementia are progressive, which means that the functioning of the brain will change over time.

However, each type of dementia affects everyone differently and with the right support, it is absolutely possible to live well with dementia.

This is a very large post and we have tried to gather as much info as we possibly could, but again we must make it absolutely clear we are not medically qualified and we do this only to try and help.

So please always check with your own doctor or medical practitioner before you take any of this information as absolutely accurate.

You’ll find masses of information about the most common types of dementia, the symptoms and the causes for each type, we do hope that you find this useful.

Cortical and subcortical dementia

Medical professionals sometimes categorise dementia into cortical and subcortical dementia.

Cortical dementia is typically associated with the brain’s grey matter, which is the characteristic outer structures of the brain.

These outer structures have an important role in processing information and in functions such as language and memory.

Types of cortical dementia include Alzheimer’s, frontotemporal dementia, Binswanger’s disease and Creutzfeldt-Jakob disease.

Subcortical dementia initially affects structures below the cortex in the innermost parts of the brain known as white matter.

These inner structures responsible for controlling the speed of thought processes and emotions.

Types of subcortical dementia include Huntington’s disease, Parkinson’s dementia, and AIDS dementia complex.

The progression of dementia is not necessarily affected by category or type, but a variety of factors including lifestyle, health and genetics.

The most common types of dementia

To date, research has discovered over 100 types of dementia.

The most common types of diagnosis in the UK are:

Alzheimer’s

Alzheimer’s is the most commonly diagnosed type of dementia in the UK. 60-80% of those living with dementia have Alzheimer’s and this is perhaps why there’s widespread misuse of the two terms, which are often incorrectly used interchangeably.

Alzheimer’s is a type of dementia.

With Alzheimer’s disease, abnormal proteins called plaques and tangles simultaneously damage the internal and external structures of brain cells.

In time, the damage caused by abnormal proteins disrupts the chemical connections between brain cells, meaning they are unable to communicate information around the brain and body and eventually causing brain cells to die.

Vascular dementia

The narrowing or blockage of blood vessels restricts the blood flow and oxygen supply to the brain.

With a limited oxygen supply, the cells in the brain are not able to respire, causing them to become damaged or die.

The symptoms of vascular dementia can occur suddenly, following one large stroke or they can develop over time, after a series of smaller strokes.

Vascular dementia can also be caused by disease affecting the small blood vessels deep in the brain, known as subcortical vascular dementia.

Mixed dementia

With mixed dementia, more than one type of dementia occurs simultaneously in the brain.

The most common types of dementia to occur simultaneously are Alzheimer’s disease (caused by abnormal proteins called plaques and tangles which destroy nerve cells in the brain) and the blood vessel changes associated with vascular dementia.

Several types of dementia can often coexist in the brain, such as Alzheimer’s, vascular dementia, and dementia with Lewy bodies.

Dementia with Lewy bodies (DLB)

Dementia with Lewy bodies is caused by abnormal protein structures called Lewy bodies (alpha-synuclein) that appear in nerve cells in the brain.

Researchers don’t yet have a full understanding of why Lewy bodies appear, but DLB is linked to low levels of important chemicals (mainly acetylcholine and dopamine) that carry messages between nerve cells, causing a loss of connections between nerve cells.

Lewy bodies disrupt the cells’ ability to transmit information around the brain and body, causing them to die.

Frontotemporal dementia (FTD)

The name ‘frontotemporal’ comes from the areas of the brain which are affected.

With frontotemporal dementia, the build-up of abnormal proteins inside the nerve cells in the front and side areas of the brain interrupt the communication between cells, reducing the information sent around the brain and body, eventually causing the cells to die.

The symptoms of frontotemporal dementia vary depending on what area of the brain is affected:

Two-thirds of people with FTD are diagnosed with behavioural variant. Unlike Alzheimer’s, the early stages of behavioural FTD doesn’t affect day-to-day memory or perception.

During the early stages of behavioural FTD, changes personality and behaviour become noticeable.

  • There are two further types of frontotemporal dementia, both of which affect the language functions of the brain. These difficulties with language become apparent slowly, often over a couple of years:
  • Aphasia – language loss with common symptoms including difficulties in speech production such as stuttering or mispronunciation, grammatical errors and impaired understanding.
  • Semantic dementia – Although speech may be fluent, the vocabulary begins to decline and symptoms include confusion regarding the meaning of familiar words, difficulty in finding the right word or recognising familiar objects.
  • Motor disorders – About 10–20 percent of people with FTD also develop a motor disorder, which causes difficulties with movement. These motor disorders include motor neurone disease, progressive supranuclear palsy and corticobasal degeneration. These three conditions share similar symptoms such as twitching, stiffness, slow movements and loss of balance or coordination.

As the FTD progresses, more of the brain becomes damaged and the differences between the types of FTD become less obvious.

Later stages of FTD begin to share symptoms with Alzheimer’s disease, such as confusion, disorientation, memory loss and changes in behaviour.

Around 5% of dementia diagnoses are rarer types of dementia

At only approximately 5%, rarer types of dementia account for a small percentage of dementia diagnoses. These rarer types of dementia are usually more common under 65 years of age.

Creutzfeldt-Jakob Disease (CJD)

CJD is unlike most other forms of dementia because it can be contracted in different ways. CJD is caused by an abnormally shaped protein called a prion infecting the brain which damages the nerve cells, inhibiting their ability to communicate information around the brain and body, causing them to die.

A recent discovery in CJD research* identified a new form which is contracted by eating meat from cattle infected with bovine spongiform encephalopathy (BSE). This typically affected younger adults.

Symptoms of Creutzfeldt-Jakob Disease

In the early stages of CJD, symptoms can often be associated with the symptoms of Alzheimer’s including minor lapses of memory, mood changes and loss of interest. CJD typically progresses quickly, and symptoms such as clumsiness, confusion and impaired motor skills such as walking or talking can occur within weeks.

Symptoms in the later stages of CJD progress to jerky movements, shakiness, stiffness of limbs, incontinence and loss of the ability to move or speak.

Alcohol-related brain damage

As the name suggests, alcohol-related brain damage (ARBD) is caused by regularly drinking too much alcohol over a sustained period of time, usually several years.

The term ARBD includes several different conditions including Wernicke-Korsakoff syndrome and alcoholic dementia. None of these are actually a type of dementia, but they share similar symptoms.

  • The most common form of ARBD is alcoholic dementia which may also be called alcohol-related dementia. Excessive and sustained consumption of alcohol damages the nerve cells in the brain because not only is alcohol a toxin, but alcohol also interferes with the body’s ability to absorb vitamin B1 (thiamine). Thiamine is an important vitamin which provides the body with energy, and since the brain is the organ in the body which uses the most energy, a deficiency in thiamine causes a decline in the brain’s ability to function.
  • There are two stages in the development of Wernicke-Korsakoff syndrome. The first is Wernicke’s encephalopathy, which usually develops suddenly after abrupt alcohol withdrawal where thiamine levels plummet. Wernicke’s encephalopathy requires immediate treatment with intravenous thiamine, but if left untreated, Korsakoff’s syndrome usually develops. Korsakoff’s syndrome causes damage in several areas deep within the brain. These structures are responsible for short-term day-to-day memory.

Symptoms of ARBD

The symptoms of dementia caused by ARBD largely reflect the areas in the person’s brain that are damaged.

Symptoms include memory loss (particularly short-term memory), difficulty in planning, making decisions and judgements, impulsive behaviours such difficulty controlling emotions, problems with attention and a lack of sensitivity.

Dementia-related conditions

There are a number of conditions which can cause or mimic symptoms of dementia such as Parkinson’s, Corticobasal Degeneration (CBD), Huntington’s, Normal Pressure Hydrocephalus and Progressive Supranuclear Palsy (PSP).

Each condition may cause different types of dementia and symptoms to develop. You can find out more in the ‘dementia-related conditions’ section.

Young-onset dementia

Anyone living with dementia who is under 65 years of age is described as having early-onset or young-onset dementia and it is estimated that 42,000 younger people (under 65 years of age) are living with dementia in the UK.

There are many types of young-onset dementia, ranging from more common types to rarer types. You can find out more in the ‘young-onset dementia’ section.

There are a number of conditions which can increase the risk of dementia, directly cause dementia and mimic similar symptoms of dementia.

Parkinson’s

After living with Parkinson’s for a sustained period of time, the potential to develop dementia increases.

There are to main types of dementia which affect people living with Parkinson’s – Parkinson’s dementia and dementia with Lewy bodies which share similar causes.

The main difference is that problems with movement occur before cognitive symptoms in Parkinson’s dementia, but in dementia with Lewy bodies, cognitive symptoms occur before, or coincide with, problems with movement.

With both types of dementia, Lewy bodies spread from the brain stem to other structures in the brain, disrupting the cells’ ability to transmit information and causing them to die.

Symptoms of dementia associated with Parkinson’s disease vary with each individual from one day to the next.

The most common symptoms are memory loss, impaired thought processing and difficulties in carrying out everyday tasks. Someone living with Parkinson’s and dementia may become obsessive and struggle to control their emotions.

It’s not uncommon for symptoms such as visual hallucinations (seeing things which are not really there) to also occur.

Corticobasal degeneration (CBD)

Corticobasal degeneration is a rare disease typically affecting people between the ages of 60 and 80 and causes various symptoms of dementia to develop.

With CBD, areas of the brain such as the cortex (outer structures of the brain, sometimes referred to as grey matter) and the basal ganglia (inner structure) become damaged and begin to shrink.

Medical and scientific research have not yet been able to provide us with an answer to what causes CBD, but an excessive level of an abnormal protein called tau is thought to be connected.

The symptoms of CBD vary with how progressed the condition is. Initial include problems with movement, stiffness and a failure to control hand movement on one side.

Later stages of CBD develop other symptoms, such as a loss of balance & coordination, and difficulties speaking as well as cognitive symptoms associated with dementia, including problems with memory and thinking.

Huntington’s

Huntington’s disease is hereditary and caused by inheriting a defective gene. This defective gene causes abnormal movements and problems with coordination.

As Huntington’s progresses, symptoms typically associated with dementia begin to develop such as difficulties with thought processing, concentration, planning, controlling emotions and behaviour, as well as a decline in short-term memory.

The type of dementia associated with Huntington’s differs from Alzheimer’s disease in that those affected continue to recognise people and places until the very late stages of the illness.

Normal pressure hydrocephalus (NPH)

Normal pressure hydrocephalus (sometimes also referred to as Hakim’s syndrome and symptomatic hydrocephalus) is caused by excessive cerebrospinal fluid accumulating in the brain’s structures.

Hollow fluid-filled chambers in the brain called ventricles become filled with cerebrospinal fluid and as the ventricles swell, they can damage nearby brain tissue and disrupt the cells’ ability to communicate with one another.

NPH shares symptoms with Alzheimer’s disease, including declining thought processes, planning, decision-making and changes in personality and behaviour.

NPH can also cause difficulty in walking – sometimes compared to walking on a boat with the body bent forward, legs held apart and shuffling foot movements.

Later stages of NPH usually affect bladder control and the structures of the brain become affected. Treatment is available for NPH, which involves draining excess fluid in a surgical procedure.

Although the success of this treatment varies depending on how early the condition is diagnosed, some people make an almost complete recovery.

Posterior cortical atrophy (PCA)

PCA is also sometimes referred to as Benson’s syndrome and it is a rare degenerative condition in which damage occurs at the back (posterior region) of the brain.

In the majority of people diagnosed with PCA, Alzheimer’s is identified as the cause.

In the initial stages, PCA usually causes problems with vision and comprehension, such as recognising faces and objects, and also problems with literacy and numeracy.

As the disease progresses, a person living with PCA is likely to develop symptoms typical of Alzheimer’s such as confusion and memory loss.

Progressive supranuclear palsy (PSP)

Sometimes known as Steele-Richardson-Olszewski syndrome, progressive supranuclear palsy is a rare and progressive movement disorder which affects many areas of the brain.

Medical and scientific research has not yet established the cause of PSP, but an abnormal protein deposit called tau is thought to be connected.

These abnormal protein deposits restrict the nerve cells in the brain from communicating with one another, causing symptoms such as paralysis of eye movements, double vision, stiff or slow movements, difficulties in speaking and swallowing, and changes in behaviour and personality.

Whilst a small proportion of people with frontotemporal dementia sometimes develop PSP as an ‘overlapping’ condition, in most cases, the person is more likely to be described as ‘experiencing cognitive difficulties’ rather than ‘having dementia’.

Although a person living with PSP may experience problems with their speed of thinking and memory, they will remain aware of what is going on around them which is a key difference between PSP and dementia.

Multiple sclerosis

The term ‘dementia’ is not generally used in association with multiple sclerosis.

Although a person living with multiple sclerosis may experience a decline in their cognitive abilities such as their memory, concentration and problem solving, these symptoms are usually less severe as in other forms of dementia.

The phrase ‘experiencing cognitive difficulties’ is more commonplace when describing the condition of a person living with multiple sclerosis.

Types of young-onset dementia & early-onset dementia

Anyone living with dementia who is under 65 years of age is described as having early-onset or young-onset dementia.

The age of retirement has historically been 65, and the term ‘young-onset’ refers to dementia occurring before the traditional retirement age.

It is estimated that 42,000 younger people (under 65 years of age) are living with dementia in the UK. 10% of all young-onset dementia diagnoses indicate that the condition has been inherited from a parent, which suggests that young-onset dementia is more likely to be hereditary than other forms of dementia.

The causes of young-onset dementia are similar to other forms of dementia, but there are some important differences.

Young-onset Alzheimer’s

As with ‘late-onset’ Alzheimer’s, this type of dementia is caused by the formation of abnormal proteins called plaques and tangles in the brain which implicate the nerve cells’ ability to communicate.

Alzheimer’s is the most common type of dementia in both older and younger people, but younger people are more likely to have an ‘atypical’ (unusual) form of Alzheimer’s.

Unlike Alzheimer’s typically experienced by older people, the initial symptoms of Atypical Alzheimer’s is not memory loss, but problems with vision, speech or planning, decision-making and behaviour.

Young-onset vascular dementia

As with ‘late-onset’ vascular dementia, this type of ‘young-onset’ dementia is caused by restricted bloodflow to the brain, starving the brain cells of oxygen. Vascular dementia is closely linked to diabetes and to cardiovascular diseases in younger people.

Symptoms of vascular dementia may vary and younger people are more likely to experience problems with thought processing than memory loss.

Vascular dementia can also be hereditary, and this genetic form of vascular dementia known as CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is most common in people aged 30 to 50. Symptoms of CADASIL include migraines, repeated strokes, fits, low mood and progressive loss of mental abilities.

Young-onset frontotemporal dementia

As with late-onset frontotemporal dementia, the build-up of abnormal proteins inside the nerve cells in the front and side areas of the brain interrupt the communication between cells.

Whilst frontotemporal dementia is somewhat rare in older people, the percentage of younger people living with frontotemporal dementia is significantly higher at around 10-15%.

Medical research has established notable evidence to suggest that frontotemporal dementia is genetic in approximately 1 in 3 occasions.

Young-onset alcohol-related brain damage

Alcohol-related brain damage includes Wernicke Korsakoff’s syndrome and alcoholic (or alcohol-related) dementia. ARBD is caused by a lack of thiamine (vitamin B1), direct damage to nerve cells from alcohol which is a toxin, head injuries and a poor diet.

This type of dementia occurs most often in younger people who are often diagnosed in their 50s. At least 10% of people living with alcohol-related dementias are classed as younger people.

Symptoms of ARBD are dependent on the area of the brain that is damaged.

Symptoms include memory loss, difficulty in planning, making decisions and judgements, impulsive behaviours such difficulty controlling emotions, problems with attention and a lack of sensitivity.

Rarer forms of young-onset dementia

A significantly higher proportion of younger people than older people develop rarer types of dementia (around 20-25%). Neurological conditions such as Huntington’s disease, progressive supranuclear palsy, corticobasal degeneration and Creutzfeldt-Jakob disease (CJD) cause progressive damage to the nervous system and these degenerative neurological conditions are known to cause dementia.

Metabolic disorders such as Gaucher’s disease, Tay Sach’s disease and Niemann-Pick’s disease are also known causes of young-onset dementia because they typically develop in childhood or adolescence.

Hormone disorders such as thyroid problems, vitamin deficiencies, inflammatory conditions such as multiple sclerosis and infections such as HIV are also known causes of dementia – particularly in younger people.

What causes dementia?

Although dementia is typically associated with age, dementia is not a normal part of ageing.

There are many different types of dementia, and each can be caused by a variety of different factors. The particular reason that causes someone to develop dementia is still unknown, but lifestyle is thought to have a significant role in the risk of developing dementia.

Lifestyle causes 

Lifestyle choices such as maintaining a healthy diet, participating in regular exercise and avoiding smoking will help reduce the risk of serious conditions such as stroke, heart disease and cancer – all of which contribute to increased risk of developing dementia.

Specific causes

All dementias are caused by the destruction of nerve cells in the brain, but certain types of dementias have more specific causes than others.

Vascular dementia – when blood flow to the brain is restricted by an obstruction in the blood vessels, the brain doesn’t receive sufficient oxygen for the cells to respire effectively.

Without sufficient oxygen, the cells in the brain will die, which disrupts the communication of information around the brain and body and causes symptoms of dementia to develop.

Diseases – dementias caused by other diseases account for approximately 5% of dementia diagnoses in the UK. Parkinson’s, Huntington’s, HIV, progressive supranuclear palsy, Creutzfeldt-Jakob disease and learning disabilities all contribute to the development of dementia for those living with the condition.

Injury  medical and scientific research for trauma-related dementias is still in its early stages at the moment, but there is some initial evidence to suggest that some types of traumatic brain injury – particularly if repetitive (such as those received by sports players) have been linked to the development of dementia in later life.

Reversible factors – some dementias can be caused by underlying causes including vitamin deficiencies, thyroid abnormalities and mental health conditions such as depression.

Dementia with Lewy bodies

Each person living with dementia with Lewy bodies will have a different experience, but like all types of dementia, DLB is progressive and the abnormal proteins responsible for the causing damage to brain cells (Lewy bodies) will continue to build up in structures of the brain.

The spread and density of the Lewy bodies will vary with each individual. This means that the symptoms each individual will experience is also unique to each person because the Lewy bodies will affect different parts of the brain which have different functions.

Mild

Dementia with Lewy bodies also shares symptoms with Alzheimer’s in the early stage, and symptoms include:

  • Problems with attention and awareness, which can fluctuate significantly daily and even from moment to moment.
  • Difficulty in judging distances
  • Disorientation can lead to falls and fainting
  • Sleeping becomes disrupted
  • Ability to plan and organise becomes affected
  • Recurrent visual and auditory hallucinations can lead to distorted perceptions and delusions of persecution

Moderate

The earlier symptoms of dementia with Lewy bodies will become increasingly noticeable and signs that someone living with dementia with Lewy bodies has reached a moderate stage include:

  • Noticeable decline in motor skills which cause difficulties with movement.
  • Twitching
  • Stiffness
  • Slow movements
  • Loss of balance or coordination

Severe

As dementia with Lewy bodies progresses into the ‘severe’ stage, symptoms include:

  • Frequent and sustained confusion about days, times and places
  • Significant memory decline which may include forgetting events, names and faces
  • Communication problems become increasingly evident and speech can become challenging
  • Behavioural changes such as compulsive rituals, repetition and agitation
  • Slow movements
  • Difficulties in swallowing and eating – often causing weight loss

Diagnosing dementia

Dementia is not a normal part of ageing. So occasionally forgetting an item off your shopping list or missing an appointment doesn’t need to be an immediate cause for concern.

However, if you or a loved one is feeling worried about changes in your cognitive or physical abilities, seeking advice from your doctor will help you understand the cause of these changes.

Noticeable changes in your cognitive and physical abilities and behaviour may be caused by a treatable condition and seeking medical advice will help you access the right treatment.

If the cause of these changes is due to dementia, getting a formal diagnosis can be helpful to both yourself and your loved ones for many reasons.

Although a formal diagnosis can be a worrying prospect, having a full understanding of your health will help you plan for the future to ensure that your decisions today will help you live an enriched life in the future.

With medical and scientific research making new advances every day, the range of available treatment is under ongoing development. Getting a diagnosis will help you access appropriate treatment wherever it’s available.

It is absolutely possible to live well with dementia, and with a dedicated support network of loved ones, medical professionals, charities and care providers, you’ll be able to access the treatment, advice and companionship you need to help you life the life you know and love.

Who can diagnose dementia?

Occasionally a GP or specialist nurse will make the diagnosis, depending on their expertise and training, but diagnoses are usually by specialist medical professionals such as:

  • Psychiatrists – a mental health specialist
  • Geriatricians – a doctor specialising in the physical health of older people
  • Neurologists – a doctor specialising in diseases of the nervous system

What does a diagnosis involve?

Your local doctors’ surgery is a familiar location filled with familiar faces, which can be valuable comforts when having an initial discussion about dementia.

Your GP will be able to offer their advice and guidance, they may make an initial diagnosis or they might refer you to a colleague or specialist to ensure that you receive a detailed assessment.

There is no single test for dementia.

The human brain is a phenomenally intricate organ, and a combination of assessments will help you understand your circumstances.

After an initial discussion you may participate in:

  • A discussion with your GP will give you an opportunity to talk about how changes in your health have developed and how they’re affecting your daily life. It’s usually advisable for a loved one to also attend this discussion, to offer their own perspective and provide support.
  • A physical examination and tests such as blood tests will help gather further information about your health and eliminate other possible causes for the symptoms
  • Mental abilities will then usually be tested by memory tests and cognition tests. These tests aren’t designed to be a trick – their role is to help your medical team understand how your brain processes information. Simpler tests are usually carried out by a nurse or doctor, more specialist tests by a psychologist.
  • Sometimes more information is needed before a conclusive diagnosis can be made. A scan of the brain will usually indicate the type and extent of the damage to the brain.

The more detail you can discover regarding your health, the more you’ll be able to understand and plan for the future.

Treatments for dementia

Although a majority of dementias cannot currently be cured, medical and scientific research is unrelenting in the commitment to developing new treatments for dementia.

Advances are being made every day. Even if a research project doesn’t produce evidence for a cure, the information gained from the research will help to develop further research so future research can be more focused and effective.

Although dementia may affect many aspects of cognitive functioning, a support network of loved ones, medical professionals and care providers will ensure you receive the support to help you access the life you know and love.

Many people living with dementia lead active and fulfilling lives for many years. It is absolutely possible to live well with dementia.

Non-medical treatments for dementia

With ‘person-centred’ support (focusing on that person and their individual needs and preferences), much can be done to help someone live well with dementia without drugs or medication.

In many circumstances, health professionals actually advise that you or your loved one explores a variety of non-drug support options before seeking medication.

This isn’t without good reason. By building a support network of medical professionals, care providers, loved ones, groups and charities will ensure you receive the advice, guidance and compassion you need to truly live well with dementia:

  • The news that you or a loved one is living with dementia can be an emotional time and a diagnosis can leave you feeling isolated and anxious. By sharing your thoughts and feelings during talking therapies such as counselling or support groups, you will be able to find reassurance, support and advice on understanding your diagnosis and planning for the future to ensure you can keep living the life you love.
  • Cognitive stimulation therapy will help to keep the brain active which is an important way to combat the damaging effects of dementia. Cognitive stimulation therapy involves doing themed activity sessions over several weeks and they can be a valuable avenue to meet new friendly faces and support one another.
  • Independence is often a concern for someone living with dementia. Although cognitive functioning declines over time, there is much that can be done to help you or your loved one live safely, confidently and as independently as possible. There are practical devices such as pill boxes or calendar clocks which are designed to break tasks into simpler steps that are easier for the brain the process. The support of a care provider is also a valuable source of support for you and your loved ones.
  • Activities such as storytelling, story-sharing and reminiscing can be an enjoyable experience. By sharing life stories and memories, the activities and interaction can help improve someone’s mood, wellbeing and mental abilities.
  • Other popular activities are often organised by charities and support groups, and they are available across the country. It is absolutely vital that people living with dementia stay as active as they can – physically, mentally and socially. Taking part in meaningful activities such as singing, exercising or craft work enables you or your loved ones to discover companionship, confidence and self-esteem.
  • Medication

    Scientific and medical research has developed medication in various forms such as tablets and vaccines, all of which can help to treat the symptoms of dementia.

    There are three main drugs that are widely used in the treatments for dementia-related symptoms: donepezil, rivastigmine or galantamine.

  • These drugs are most often prescribed to those living with mild to moderate Alzheimer’s and they are designed to help with memory, motivation, concentration and aspects of everyday life. As Alzheimer’s progresses and the symptoms become too challenging for these drugs, a drug called memantine may be prescribed to help ease severe symptoms or challenging behaviours.The three drugs which are most often used to treat the symptoms of Alzheimer’s (donepezil, rivastigmine and galantamine) can also be helpful for someone with dementia with Lewy bodies who are experiencing distressing hallucinations or delusions or challenging behaviours.

    Those living with vascular dementia will typically be prescribed medication which is designed to tackle the medical condition(s) which caused the dementia. Drugs which control high blood pressure, high cholesterol, diabetes or heart problems can help to steady the progression of dementia.

    Given that experiences of dementia vary extensively from person to person, the medication received by one individual is likely to vary from another depending on the type, stage and symptoms. Drugs for depression or anxiety, sleeping tablets or antipsychotics are often used simultaneously with other drugs to ease the symptoms of dementia.

  • Living well with dementia

    The landscape of dementia care is changing. The historic term of ‘senile dementia’ is no longer in use, and living with dementia does not mean that lifestyle and liberty are immediately surrendered. While some lifestyle changes may be made as time progresses, planning ahead and making decisions about your lifestyle will enable you or your loved one to live well with dementia.

    Coming to terms with living with dementia

    The news that you or a loved one is living with dementia can be difficult to accept. Concerns and questions may all surface immediately, or they may develop over time.

  • This is entirely natural. But by seeking support from loved ones, medical professionals and care providers, you will be able to fully understand the choices available to you. Opening up a dialogue with someone, whether they are a family member, a friend, a member of a support group or charity, will give you an opportunity to share your experiences and seek invaluable reassurance and support so you never feel isolated.
  • The prospect of adapting your lifestyle over time may feel daunting, but it’s important to remember that absolutely everyone will change their lifestyle over time, for an infinite number of reasons. A diagnosis of dementia may present different challenges than others encounter in their lives, but with your support network, you will be able to make informed decisions to enable you to live a life you love.

    Planning for the future

    Dementia can bring about unexpected changes to your health and lifestyle and these new challenges can make it difficult to think about the future. However, it’s important to think ahead and planning for the future will not only ensure that you are able to make your own decisions about the life you want, but you’ll be able to communicate your wishes with loved ones, so they can act in your best interests when needed.

    An advanced statement is not legally binding, but it is a document which outlines your preferences and wishes regarding your care and lifestyle in the future. If future decisions are made by a person on your behalf, any advance statement must be taken into account.

    As part of your preparations, you may contact a care provider to discuss how they will be able to support you in the future. Although this prospect may seem daunting or even unnecessary in the early stages of dementia, sharing your advanced statement with an experienced and caring professional will help you establish your wishes for future care, and the transition to receiving support from carers won’t be so daunting.

    If you would like to state your wishes in a legal capacity, you can:

    Establish an advanced decision – unlike an advanced statement, an advanced decision IS legally binding. An advance decision is a decision made whilst you possess mental capacity, where you can outline your refusal of a specific type of treatment at some time in the future. Although this can be difficult to discuss, an advanced decision will help you ensure you maintain control over the decisions made about your medical treatment in the future.

    Establishing a power of attorney – a power of attorney gives your nominated adult ‘attorney’ the power to act legally on your behalf for financial and property matters, plus decisions on welfare and medical treatment if you lack the capacity to do so for yourself. Although not mandatory, it is advisable to establish a lasting power of attorney through a solicitor.

  • Specialist dementia care at home

    With assistance from professional care providers, you will have the right support to enable you to live confidently, safely and independently. Your loved ones will naturally be concerned for your wellbeing, so inviting a care provider to support you in your home will give them reassurance and peace of mind. There are many options available and navigating these options may seem confusing and daunting at first, but with guidance and support, you’ll be able to make decisions which suit your circumstances and your lifestyle.

    Visiting home care

    Many care providers use different terms to refer to visiting home care. Some use the term visiting home care, others use daily home care or hourly home care and you may come across more variants still. No matter what label is attached to the service, it’s advisable to contact the care provider to discuss what support they offer with each of their services.

  • At Trinity Homecare for example, ‘Daily home care’ is available from once a week to multiple visits each day and the level of support ranges from companionshipand help with everyday household tasks, to support with aspects of personal care such as bathing and continence care. The benefit of visiting home care is that the frequency and duration of the visits you receive can be changed as your dementia progresses, and the bespoke support will ensure your welfare is at the very centre of every decision that’s made about your care. By remaining in the familiar comforts and routines of your home environment, you’ll be able to live the life you know and love, as independently as possible.

    Live-in home care

    In the later stages of dementia, you or your loved one may require more support than that which visiting home care can accommodate for. Live-in home care ensures that you or your loved one receives one-to-one bespoke full-time care from a carer (or carers) living alongside them in the home.

  • The familiarity of our own home environments can help to make us feel safe and comforted, even if we are generally unaware of our surroundings in the later stages of dementia, the senses may still recognise elements of the home environment, which can be a source of comfort in times of distress.
  • A live-in carer will be carefully selected by your care provider to ensure that they are experienced and a suitable match to your lifestyle and personality. Maintaining a regular routine is beneficial for someone living with dementia, and a live-in carer will enable you or your loved one to follow their daily routines and behavioural patters as freely as possible.

    Care homes

    Care homes offer a different environment altogether. While the buildings are secure and adapted for residents’ varying needs, the staff to resident ratio is 1:4 on average. The staff in a care home may be responsible for the care of numerous residents, a live-in carer will give you or your loved one their undivided attention.

  • Care homes are also an unfamiliar environment and although many people living with advanced dementia often relocate to a care home, the routines, comforts and familiarities of home are lost, which can be distressing and unsettling. Staying close to loved ones, keeping pets, maintaining routines and many other aspects of life should be considered before making the decision to move into a care home.

    Telecare and assistance technology

    We’re all fortunate to live in a time of extensive technological development. New technologies such as smartphones and tablets are devices which we often take for granted, but the collaboration between new technology and the care industry has produced some interesting advances in assisted care.

  • The traditional ways of recording care notes are beginning to be replaced with innovative new systems (such as TrinityConnect) which store care notes, medication records, alerts and other information in an app, which can be viewed and updated by carers, care management teams and loved ones.
  • This is an encouraging step towards transparency in care and protecting the safety of sensitive information, which may have previously been left in a folder for anyone to read without permission. You may also encounter ‘telecare’, which are various pieces of technology designed to help protect the safety of a vulnerable person when they are unaccompanied.
  • There is a vast array of devices available, and a reputable care provider will be able to offer advice and guidance about which options would be most suitable. Telecare devices can be used to support someone living with dementia if they are alone between carer visits, it enables the person to remain independent whilst enabling loved ones to respond to situations quickly in the event of wandering, falls and other alerts.
  • Living with dementia – helpful tips to live WELL

    The progressive nature of dementia means that symptoms will develop and become more significant over time. The rate of the progression and they type of dementia may vary with each person, but there are many simple ways to live well with dementia.

    Living a healthy lifestyle is important for everyone. A balanced and nourishing diet will help maintain your physical wellbeing so you can concentrate on pursuing the lifestyle you want. Remaining as active as possible is scientifically proven to boost your mood because your brain releases chemicals which promote confidence and happiness. So a healthy body and active lifestyle can really help improve all aspects of your wellbeing!

    Maintaining your social life is vital for mental health and wellbeing. Engaging in local groups, hobbies and events will not only keep your mind active, but social interaction will combat feelings of isolation. Even if you wouldn’t usually join a group or organisation, engaging with others in a shared activity will help you or your loved one feel supported as part of a community, and it’ll also give you the opportunity to share your experiences and seek advice and guidance.

    Creating the best possible environment – practical tips for the home:

    • Keep a diary and write down things you want to remember
    • Pin a weekly timetable to the wall
    • Put your keys in an obvious place, such as a large bowl in the hall
    • Have a daily newspaper delivered to remind you of the date and day
    • Put labels on cupboards or drawers
    • Place helpful telephone numbers by the phone
    • Write reminders to yourself – for example, put a note on the front door to take your keys
    • Programme people’s names and numbers into your phone
    • Install safety devices, such as gas detectors and smoke alarms
    • Put bills on direct debits, so you don’t forget to pay them
    • A pill organiser box can be helpful for remembering which medications to take and when

    Tips to help you support your loved one

    Even if you’ve been aware that your loved one has been displaying symptoms of dementia for some time, a formal diagnosis can still feel like a shock. You’ll naturally feel concerned for your loved one’s wellbeing and how you can support them, but it’s important to remember that your wellbeing is also important when caring for others.

    Caring for a loved one can be both a rewarding and isolating experience. Your commitment to caring for your loved one can often lead to you disregarding your own wellbeing because you may feel guilty or anxious when leaving them for any amount of time from 5 minutes to 5 days. It’s absolutely essential to find a balance between caring for both your loved one and yourself. If you’re finding it increasingly difficult to manage the care of a loved one, seeking support is vital. If you’re feeling overwhelmed:

    1. Share the care. Sharing your responsibilities with others can be immensely beneficial for everyone. By introducing a care provider, your loved one will receive regular support from specially trained and experienced professionals who have committed their careers to providing compassionate care to those living with dementia. Regular care visits will enable you to pursue your own lifestyle with the reassurance and peace of mind that your loved one is receiving bespoke, heartfelt care. Being cared for by different carers can be a really positive experience for your loved one too. They’re able to build friendships and engage with new people in the comfort of their own home.
    2. Establish a support network. Your support network may include your loved one, their medical team, local communities and charities, as well as friends and family. In many ways, your lifestyle will undergo changes as your loved one’s dementia progresses, and it’s important to ensure that you are able to share your experiences with others and seek support.

    Practical tips for the home:

    • Consider colours and patterns in the home. As dementia affects perception, dark coloured rugs can sometimes look like holes in the floor, and switches that are the same colour as walls can be difficult to see.
    • Help your loved one keep a diary of things they want to remember
    • Pin a weekly timetable somewhere that’s easily accessible
    • Put emergency items such as a phone within their reach
    • If your loved one has a daily newspaper delivered to remind them of the date and day, clear away old papers to avoid confusion
    • Help your loved one locate household items by labelling cupboards or drawers
    • Place helpful telephone numbers by the phone
    • Leave reminders in helpful places – for example, put a note on the front door to take their keys
    • Install safety devices, such as gas detectors and smoke alarms
    • Ease the stress of paying bills by setting up direct debits
    • A pill organiser box can be helpful for remembering which medications to take and when.

      Making decisions on behalf of a loved one

      As dementia progresses and reaches more advanced stages, the thought processes and ability to make decisions become increasingly difficult. This implicates an individual’s ability to consent to decisions about their care.

      At this stage, your loved one may need to be assessed to determine their mental capacity.

      Mental capacity

      As dementia progresses, the structures in the brain that are responsible for problem-solving, reasoning, thought processing and decision-making functions may become affected. Just as the type and progression of dementia is unique to each individual, the extent to which dementia affects mental capacity will vary, for example, someone may lack capacity to decide on complex financial issues but the capacity to make other decisions such as which items to buy at the local shop remain unaffected.

      The more advanced stages of dementia may struggle to make and communicate their decisions. At this stage, your loved one may benefit from a mental capacity assessment. Care providers and health professionals are governed by the Mental Capacity Act (MCA), which is designed to protect and restore power to vulnerable adults who lack capacity, as well as those who have capacity and choose to plan for their future.

      Five key principles of the MCA:

      • Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise
      • All practicable effort should be made to encourage and support individuals to make decisions for themselves
      • Everyone has their own values, beliefs and preferences which may not be aligned to your own, but this is not a reasonable rationale for assuming mental incapacity
      • Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests
      • A best interests decision should be the least restrictive option when considering the person’s rights and freedoms of action

      Power of attorney

      In the event that an individual lacks mental capacity, but decisions need to be made regarding their care, it is advisable for a power of attorney to act on their behalf. A power of attorney can be established through a solicitor. This process is significantly more straightforward if completed whilst the person requiring care has mental capacity to nominate a power of attorney themselves. A nominated attorney has the authority to act legally in their loved one’s best interests for financial and property matters, plus decisions on welfare and medical treatment.

      How to behave – act as naturally as possible

      Whilst certain cognitive tasks may be more difficult than others, emotions and feelings can remain intact. In the later stages of dementia, when long-term memory becomes affected, your loved one may not remember that their partner passed away and they may request to visit them.

    • If you share the distressing news that they have passed away, your loved one will experience the grief as intensely as if it were the first time, and avoiding traumatic situations is of fundamental importance to maintaining your loved one’s well being. In this scenario, it may be advisable to plan a trip to visit their partner in the future, by which point the arrangement will have been forgotten and their feelings will have been protected.Clear communication – When caring for your loved one, maintaining their dignity is of fundamental importance. Your loved one may feel distressed as their dementia affects aspects of their everyday life, but by keeping communication clear and simple, you’ll help your loved one feel supported in interaction.

      Distract and redirect – There will be times, particularly during the later stages of dementia, when your loved one may struggle to communicate with you or perform a certain task. Sometimes, even attempting to assist them can be extremely frustrating for them, so redirection and distraction can be useful ways to soothe these frustrations. Changing the subject to something new will help engage you both in a new activity.

      Allow your loved one to make decisions – Freedom of choice is an important way to maintain independence. Although decision-making abilities may be affected by dementia, there are creative ways to ensure that your loved one is still able to make choices for themselves. Open-ended questions such as “what would you like for dinner?” can cause distress, but enabling your loved one to choose their preference from a selection of options, for example, “would you like shepherd’s pie or fish & chips for dinner?” will protect their freedom of choice and independence.

      False truths – As dementia progresses, your loved one may begin to share stories which you know to be untrue. Although human nature would be to correct them, it’s important to understand that the story is true in the mind of your loved one and correcting or challenging them may this may cause confusion and distress.

      Keep life positive – A journey with dementia can be distressing for everyone involved, and maintaining a positive outlook in spite of the daily challenges can sometimes feel impossible. But there is joy to be found in every day. Look for elements of happiness and positivity in everyday life and share these with your loved one. Although they may not acknowledge your positivity in a way you’d expect, your influence will help support their mental wellbeing.

      Be open and honest – If a friend or family member finds it hard to talk about dementia, make the first move and explain how they are able to help you. This will shift the focus of power to the person living with dementia and enable them to feel like they have the ability to support others.

    • Useful dementia resources for more information and support

      With a support network in the millions spanning the globe, there are many organisations with useful resources which can help you or your loved one live well with dementia.

      National dementia resources, services and charities:

      The NHS – information and advice for people with dementia and their friends and families

      The Alzheimer’s Society is a charity which has established a nationwide network of ‘Dementia Friends’. ‘Dementia Friends’ are members of the public who have pledged their support to take action in their local communities to help those living with dementia.

      Although the Alzheimer’s Association is based in America, their website has a wealth of useful information and resources.

      Age UK not only has a useful guide providing information and advice about dementia, but their involvement in communities across the UK means their support is available nationwide.

      For information about the latest research and advances from medical science and to find out how you can help, visit Alzheimer’s Research UK.

      Being a condition of the brain, dementia has close links to mental health. The Mental Health Foundation and Mind share a mission to help people thrive through understanding, protecting and sustaining their mental health, which is equally as important for those living with dementia and their loved ones.

      Dementia Adventure is a charity which enables people living with dementia to explore new adventures and holidays which are specially designed for those living with dementia.

      Local dementia resources & services

      At Trinity Homecare, we are based in Surrey and we provide our visiting service ‘Daily homecare’ across many areas in Surrey, our Trinity-managed live-in care is available across the Home Counties and our Self-managed live-in care is available across England and Wales. We are proud to be an active member of our local community in Surrey, and we have useful connections to Surrey organisations to help support you and your loved ones.

      The Surrey Community Directory is a useful resource to help you find local clubs, groups and activities in your local area.

Carers & Care Home Staff Care Badge Of Pride

Nurses working in social care are being encouraged to wear a new “CARE” badge as a symbol of their pride in the work they do.

The green metal badge, emblazoned with the word “care”, has been created in a bid to recognise and celebrate the efforts of the nine million paid and unpaid carers working in the sector.

“The CARE badge is an eye-catching and powerful symbol of pride in the quality of care”

Martin Green

Launched today by industry body Care England and digital care planning firm everyLIFE Technologies, the initiative is being run by the newly-formed Care Badge Community Interest Company.

According to the brains behind the scheme, the badges are intended to be a “unifying symbol of pride and quality in social care for those providing, receiving or supporting care across the UK”.

Proceeds from the sale of badges, which cost £1 each, will go to care-related causes and charities chosen by care workers and those in unpaid caring roles.

The idea is that employers buy boxes of badges and hand them out free to staff and carers to wear. Those who purchase badges will also have the right to use the Care logo on publicity material.

The badge was officially launched on 26 June at the Residential and Home Care Show taking place at London’s ExCel centre.

Already more than 34,000 badges have been sold in the three weeks prior to the event, with care home operator HC-One ordering 14,500 for its staff and carers.

“The CARE badge is such a simple and inspiring idea”

Liz Jones

According to organisers, up to 50p from the sale of each badge will go to good causes with the rest covering the cost of making and sending out badges.

Charities that could benefit from funding will be suggested by staff and carers and selected by a committee of care professionals.

It was announced today that Liz Jones from the National Care Forum had been appointed as director of the CARE Badge Community Interest Company.

Professor Martin Green, chief executive of Care England, said: “The CARE badge is an eye-catching and powerful symbol of pride in the quality of care so many deliver across the UK every day.

”I shall be wearing my CARE badge with pride and I sincerely hope all of you will get a CARE badge and raise the profile of care,” he said.

Liz Jones, policy director of the National Care Forum, said “The CARE badge is such a simple and inspiring idea – a great way to recognise and thank the millions of people involved in providing great quality care across the UK and a great way to help that huge community of people feel proud and valued.”

How Did Coronavirus Spread?

The Telegraph

The new coronavirus (Covid-19) has spread to nearly every country in the world since it first emerged in China at the beginning of the year. More than 794,000 people are known to be infected and more than 43,000 deaths have been recorded – including 2,921 in the UK.

What is a coronavirus?

Coronaviruses are a family of viruses that cause disease in animals. Seven, including the new virus, have made the jump to humans, but most just cause cold-like symptoms.

Covid-19 is closely related to severe acute respiratory syndrome (Sars) which swept around the world in 2002 to 2003. That virus infected around 8,000 people and killed about 800 but it soon ran itself out, largely because most of those infected were seriously ill so it was easier to control.

Another coronavirus is Middle East respiratory syndrome (Mers), cases of which have been occurring sporadically since it first emerged in 2012 – there have been around 2,500 cases and nearly 900 deaths.

Covid-19 is different to these two other coronaviruses in that the spectrum of disease is broad, with around 80 per cent of cases leading to a mild infection. There may also be many people carrying the disease and displaying no symptoms, making it even harder to control.

So far, around 20 per cent of Covid-19 cases have been classed as “severe” and the current death rate varies between 0.7 per cent and 3.4 per cent depending on the location and, crucially, access to good hospital care.

Scientists in China believe that Covid-19 has mutated into two strains, one more aggressive than the other, which could make developing a vaccine more complicated.

How did the outbreak start?

The source of the coronavirus is believed to be a “wet market” in Wuhan which sold both dead and live animals including fish and birds.

Such markets pose a heightened risk of viruses jumping from animals to humans because hygiene standards are difficult to maintain if live animals are being kept and butchered on site. Typically, they are also densely packed allowing disease to spread from species to species.

The animal source of Covid-19 has not yet been identified, but the original host is thought to be bats. Bats were not sold at the Wuhan market but may have infected live chickens or other animals sold there.

Bats are host to a wide range of zoonotic viruses including Ebola, HIV and rabies.

How big could the pandemic get?

The disease has already taken hold in Europe, the United States and south east Asia and is beginning to wreak havoc in Africa and South America. The World Health Organization is particularly concerned at the ability of the poorest countries in the world to control the disease. To find out more about what is likely to happen, click here.

What are the symptoms of coronavirus?

Initial symptoms include fever, dry cough, tiredness and a general feeling of being unwell. Other symptoms are emerging such as a lost of taste and smell and stomach problems. For a full read-out of the symptoms and treatment of coronavirus, click here.

Is coronavirus in the UK?

33,718 people in the UK have tested positive for the virus so far.

An elderly person with underlying health issues became the first person in Britain to die having been diagnosed with the disease, Royal Berkshire NHS Trust confirmed on March 5. Since then, a total of 2,921 people have died.

Police have been handed unprecedented powers to force those at risk of coronavirus into quarantine amid fears that two GPs may have passed the virus on to patients.

Everyone in the UK must now stay at homeBoris Johnson has urged, as he implemented the biggest restriction of civil liberties “in peacetime”.

Is there a cure for the coronavirus?

There is no specific treatment, although doctors are trialling existing drugs for viruses such as Ebola, malaria and HIV. Early results seem promising but, until full clinical trials have been concluded, doctors cannot be certain that the drugs are effective.

Work to develop a vaccine is accelerating but it is unlikely to be available until next year.

How is coronavirus spread?

Like cold and flu bugs, the virus is spread via droplets when a person coughs or sneezes. The droplets land on surfaces and are picked up on the hands of others and spread further. People catch the virus when they touch their infected hands to their mouth, nose or eyes.

It follows that the single most important thing you can do to protect yourself is keep your hands clean by washing them frequently with soap and water or a hand sanitising gel.

Is the coronavirus airborne?

There is some debate about whether the disease is airborne – there is no evidence for it yet, but that could change. Airborne viruses linger for a longer period of time than those spread by droplets and can also be spread in air conditioning and ventilation systems.

The current advice is that the disease can only be spread between close contacts – defined as spending more than 15 minutes within two metres of an infected person.

Who started the coronavirus?

Various crazy conspiracy theories have been circulating that the virus somehow escaped from a Chinese lab, either by accident or design. However, this is categorically untrue and scientists studying its genetic code have linked it to bats. It probably then jumped to another animal, which passed it on to humans.

The number of diseases crossing from animals to humans is growing, and teams of virus hunters are tracking them down. 

Should I cancel my travel plans?

On 17 March, the Foreign Office advised British nationals to avoid all non-essential foreign travel for at least 30 days – no one knows whether this will be extended beyond that period.

In any case, several countries have established travel bans, preventing Britons and foreign nationals from entering. Donald Trump announced a ban on visitors to the US from Europe and the UK, while many other countries will not allow entry to British citizens. Here is the full list so far.

The Telegraph travel team has in-depth advice here on the countries affected and your rights if you cancel your travel.

How serious is the disease?

According to data on the first 44,000 cases released by the Chinese authorities, 80 per cent of cases are mild.

In roughly 14 per cent of cases the virus causes severe disease, including pneumonia, and shortness of breath. In about five per cent of patients it is critical, leading to respiratory failure, septic shock and multiple organ failure.

According to the WHO, the death rate in Wuhan is two to four per cent, whereas in the rest of China it is around 0.7 per cent.

The death rate around the world varies greatly, and there are multiple reasons for this: experts believe it could be to do with the way deaths are counted, the age of the people affected and the state of the health service in each country.

How does this coronavirus compare to past respiratory epidemics?

The 1918 Spanish Influenza – or the H1N1 virus – remains the most devastating flu pandemic in modern history. The disease swept around the globe and is estimated to have caused between 50 and 100 million deaths.

A cousin of the same virus was also behind the 2009 swine flu outbreak, thought to have killed as many as 575,400 people.

Other major influenza outbreaks include Asian flu in 1957, which led to roughly two million deaths, and Hong Kong flu, which killed one million people 11 years later.

Is there anything I should be doing to prevent myself getting it?

Yes – there are plenty of basic precautions you can take to protect yourself against catching respiratory viruses of this type – as well as following government advice and staying at home. Click for a full briefing on the symptoms, treatments and precautions you can take against the new coronavirus.

Protect yourself and your family by learning more about Global Health Security

Corona Virus: Covid-19 TOGETHER WE’LL CRACK IT

Coronavirus Covid-19 Dementia

Gareth Southgate has highlighted the challenge to mental health posed by isolation and loss of routine during the coronavirus pandemic as he made it plain football was no longer uppermost in his thoughts.

The England manager ought to have been gearing up for Wembley friendlies against Italy and Denmark and counting down to Euro 2020 but the former have been cancelled and the latter postponed until next summer.

Southgate has written an open letter to England fans in which he urged everyone to follow government guidelines and said the heroes of the coming months would not be footballers but the doctors and nurses who risk their lives caring for others. In a typically well-judged piece, he talked about both the “physical and emotional” impact of the crisis.

“For everyone in our country, the primary focus of the present – and the coming months – is undoubtedly to look after our families, support our communities and work together to come through what is clearly the most extreme test we’ve faced collectively in decades,” Southgate wrote.

“In the way you’ve all come together to support our team, we must now work together to combat a virus that is causing physical and emotional issues to so many.

So, please continue to follow the guidelines for hygiene and also the sensible precautions put in place to control the spread of the virus in order to protect those most vulnerable to its impact. That responsibility lies with us all.

“We are also conscious of the economic uncertainty affecting so many businesses and, consequently, virtually every family. Coupled with the unique challenges of self-isolation, the loss of routine to normal working and social life, we face real challenges to our mental wellbeing. Our children may feel anxious with uncertainty. It’s not normal for any of us and it’s going to challenge us all.

“We were due to play next week and to represent you all this summer but now is clearly not the moment for us to take centre stage. The heroes will be the men and women who continue working tirelessly in our hospitals and medical centres to look after our friends and families. They won’t receive the individual acclaim but we all know their importance is beyond anything we do on the pitch.”

The Euros have been moved from 12 June-12 July of this year to 11 June-11 July of next, with the intention being to stage the tournament as planned across 12 cities, including London, Glasgow and Dublin.

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“When we play again as an England team, it will be at a time when not only our country but the rest of the world as well is on the road to recovery,” Southgate added. “Hopefully we will be closer to each other than ever and ready for the beautiful distraction that football can bring.

“To play in a European Championship next summer will still be possible for all of our squad and so we shouldn’t spend another moment thinking about the postponement of the competition. I feel sure when that moment comes I will never have been prouder to be the leader.”