Lewy Body Dementia Care Homes Dementia Care Choice & Support

A person with dementia will need more care and support as their symptoms get worse over time. This may mean that a move into a care home can better meet their needs.

If you have been helping someone live independently with dementia or are a carer, this can be a hard decision to make.

But it’s important to remember that there can be many positive aspects to moving into a care home.

These include:

24-hour support from care staff
knowing that the person with dementia is in a safe place
social activities with other residents

Deciding to move into a care home

Sometimes the person themselves can make the decision. But the person with dementia often lacks the ability to decide (lacks mental capacity).

If you or someone else has a lasting power of attorney, you can make the decision for the person with dementia, as long as it’s in their best interests.

Try to talk to the person with dementia about their preferences regarding care in a home, even if they lack the capacity to make a decision over what care home is best for them.

First steps: getting an assessment

The first step towards choosing a care home is to get a new needs assessment from social services.

If the assessment suggests a care home would be the best option, the next step is a financial assessment (means test).

The financial assessment will show if the council will pay towards the cost of a care home.

In most cases, the person with dementia will be expected to pay towards the cost.

Social services can also provide a list of care homes that should meet the needs identified during the assessment.

The different types of care home

There are 2 main types of care home:

residential care homes
nursing homes

Some care homes offer both residential and nursing care places.

Care homes can be run by private companies, voluntary or charitable organisations, or sometimes by local councils.

Residential homes

These provide personal care, such as help with:

washing
dressing
taking medicines
going to the toilet

Search the directory of residential care homes

Nursing homes

These provide personal care, as well as 24-hour care from qualified nurses. These are sometimes called care homes with nursing.

Search the directory of nursing homes

Both types of care home should have staffed trained in dementia care.

Tips on choosing a care home

One of the most important things to check when choosing a care home is the most recent Care Quality Commission (CQC) report.

The CQC regulates all care homes in England. Its inspection reports can show you how well a care home is doing and any areas of concern.

When visiting a care home, spend time looking around and talk to the manager and other staff and residents.

It’s useful to take a friend or relative with you as you can compare notes after your visit.

It’s a good idea to make your own checklist before visiting care homes. These tips may help.

Location

You may already know of a care home through personal recommendation or from social services.

Check the following:

Is the care home near family and friends?
Are there good transport links?
Are there shops, leisure facilities and cafes nearby?

Facilities

It’s a good idea to ask to see a couple of bedrooms, as long as current residents are happy with this.

Other things to ask about include:

Can residents have their own room, with space for their own furniture and possessions?
Are there enough toilets within easy reach of bedrooms and living space?
Is there a garden where residents can walk safely?
Are chairs arranged in groups in living areas to encourage socialising, rather than round the edge of the room?
Will the home meet specific religious, ethnic or cultural needs?
Are residents’ food likes and dislikes catered for?

The staff

Check if the manager of the home arranges a care assessment of potential residents to make sure it can meet their needs.

The residents

A good sign of a well-run care home is residents who appear happy and responsive.

Other things to consider include:

Are residents treated with dignity and respect by staff?
Can they have visitors whenever they want?
Are there regular residents’ meetings?
Have they got access to community health services, such as chiropodists and opticians?
Can you continue to help care for your relative in some way, perhaps helping them with an activity?

Read more from Alzheimer’s Society about things to think about when visiting care homes.

Which? Elderly Care has a useful checklist to use when visiting a care home.

Paying for a care home

Who pays for care will depend on individual circumstances.

If you’re entitled to local council funding, the council will set a personal budget. This will set out the overall cost of a care home, what the council’s contribution will be, and what you’ll have to pay.

The council must show there’s at least 1 suitable care home available at your personal budget level.

If you choose a care home that’s more expensive than the council considers necessary, top-up fees may have to be paid.

If the person with dementia isn’t eligible for council funding, they’ll have to pay the full cost of the care home (known as self-funding).

NHS continuing healthcare and NHS-funded nursing care

If the person with dementia has complex health and care needs, they may be eligible for NHS continuing healthcare. This is free and is funded by their local clinical commissioning group (CCG).

A diagnosis of dementia doesn’t necessarily mean the person will qualify for NHS continuing healthcare.

People who don’t qualify for continuing healthcare, but have been assessed as needing care in a nursing home, may be eligible for NHS-funded nursing care.

This means the NHS will pay a contribution towards the cost of their nursing care.

Find out more about NHS continuing healthcare and NHS-funded nursing care

Read Age UK’s factsheet on Finding, choosing and funding a care home (PDF, 525 kb).

Get help and advice

Choosing a care home and finding out about the different funding options isn’t easy.

Charities and voluntary organisations can provide valuable help and advice. Try:

Alzheimer’s Society’s National Dementia Helpline on 0300 222 1122
Age UK’s Advice Line on 0800 055 6112 (free)
Independent Age on 0800 319 6789 (free)

Lewy Body Dementia Shocking Tough Choices Heartbreaking Decisions

When a loved one is nearing the end of life from a disease like Lewy body dementia, emotions run strong, and confusion can overtake the decision process.

I want to share my own personal experience as an LBD caregiver in the hopes it will help others.

We engaged hospice services for my father before he was in the dying process. And I’m so glad we did. He had taken to keeping his eyes closed much of the time he was awake. And slowly he lost the strength to bear any weight on his legs.

In came hospice staff and all of their wonderful resources.

I was surprised when he became more alert and responsive under their care. Looking back, now I realize it makes perfect sense.

They used a proactive strategy to manage the normal aches and pains of getting older and being less active. He had clearly been living with pain but was unable to express it.

How long had that being going on? After a month or two, they suggested further improvement might negate the need for hospice care.

But then influenza swept through the memory care residence. Despite aggressive cleaning efforts by the staff, the flu spread. It wasn’t long before Dad developed a high fever and couldn’t be awakened.

When he was diagnosed with LBD 8 years earlier, I became his “right hand” in all matters.

Together we waded through medical, financial and family affairs. He asked me to go with him to see an elder law attorney to review his legal affairs.

He updated some of his legal documents, but decided against creating an advanced directive, a binding document that identifies ones wishes for medical care if they are dying but unable to speak for themselves.

At the time I was still adjusting to the reversal of our father/daughter roles to press him on it further. As his cognitive abilities declined, I more confidently took over as power-of-attorney and made all decisions in his best interest.

But now he was unresponsive.

One day passed, then another, and yet a third, and still he was no better.

I started questioning the hospice staff more aggressively.

Shouldn’t we hydrate him?

Does he need tube feeding?

How could he possibly recover from the flu if we allow him to become weakened?

I realized then how much I should have pressed Dad on end-of-life decisions when he was in the early stages of LBD.

I was going to have to make this call on my own.

I had arrived at the crossroads of sudden grief for me or extended life for him.

The Importance of Sensitive Discussions

The thought of discussing end-of-life decisions can be painful for everyone, especially if a person is in the early stage of a terminal illness.

That is completely normal, as it requires envisioning the future in which a loved one dies.

But with any terminal illness, including neurodegenerative diseases like LBD, it’s important to have those sensitive discussions early.

This enables the person experiencing mild dementia to express their care preferences while they still can articulate their thoughts and feelings clearly.

End-of-life issues include determining what medical interventions are desired, or should be avoided, when a person is dying.

Such interventions include emergency care or hospitalization, CPR (cardiopulmonary resuscitation), ventilator use, artificial nutrition (tube feeding), artificial hydration (intravenous fluids) and comfort care.

So many of these decisions are intensely personal ones and require asking difficult questions. What are the care priorities are of the ill person?

Do they want to extend their functional ability, maximize their quality of life, or lengthen life?

Comfort care, which is care that alleviates pain and distress, can be started in any stage of dementia, but is an important part of caring for the person with end-stage dementia.

It improves quality of life through reduction of distress.

Tube Feeding or No Tube Feeding? That is the Question.

The biggest question I wrestled with when my father was at the end of his life was nutrition. He had already gone 3 days without food or drink.

I thought perhaps if we used tube feeding or intravenous fluids it might strengthen his ability to recover. But the flip side of the coin kept staring me in the face. What was I saving him for?

People in the advanced stage of LBD are in a progressive state of physical decline. Certainly that was the case with Dad. Even if he recovered from the flu, he’d never recover from advanced LBD.

Like others with LBD, muscle weakness may affect his swallowing ability.

This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, he’d probably succumb to pneumonia or heart failure after months of being bedridden.

After conferring with those closest to him, I decided to leave my father’s fate in nature’s hands; either his fever would break, or he would begin the dying process.

The Evidence is Clear

I later learned what experts recommend about tube feeding and advanced dementia care. There is no evidence that supports the use of feeding tubes in advanced dementia and experts recommend that it not even be offered as a treatment option.

Instead, the recommendation by the American Geriatrics Society is to provide food or liquid by hand-feeding, only to the extent that it is enjoyed by the person receiving care.

There is no evidence of longer survival, less pneumonia, improved wound healing, weight gain or improved quality of life with the use of feeding tubes.

So how did nature take its course?

After a week of being unresponsive from the fever, out of the blue my father opened his eyes, stared straight into mine, took a few more breaths and left this world.

It’s been almost four years now. And I am still at peace with my decision.

For more information on comfort care at end of life, read “End of Life: Helping With Comfort and Care” published by the National Institute on Aging.

https://www.lbda.org/go/lbd-story-facing-tough-choices-end-life

Dementia with Lewy Bodies Documentary

Lewy Body Dementia – The Painful Truth

Lewy Body Dementia Caregiver’s Story

Lewy Body Dementia Caregiver’s Story – Link at bottom of page.

My Dad was in his early 70s when I started noticing differences in his behaviour.

Sometimes he couldn’t remember what happened an hour ago and he began to have times when he was confused on a regular basis.

Dad used to have frequent hallucinations, mostly about animals and small children.

They weren’t scary hallucinations, but he used to often feed an imaginary dog that used to come to visit.

Dad also developed a Parkinson’s type tremor.

He was then diagnosed with Dementia with Lewy Bodies and it all started to make sense.

Finding happy memories

At first, Dad used to get frustrated at what he couldn’t remember. Dementia can be so cruel, it can affect anyone, no matter what their background.

My Dad was a lawyer, super-smart and logical.

He was a man with great reasoning and memory. But when the dementia set in, he often couldn’t remember where he was going, or what he was focusing on.

So we used to instead focus on memories from before he got sick.

We’d talk about Christmas traditions, and talk about holidays.

Dad may not have been able to remember what he had for lunch, but he could remember the consistency of the sand on every single beach that he’d ever walked on, and that gave him happiness.

Getting around with dementia

One of the biggest challenges of offering care for my Dad was getting out and about.

Dad always enjoyed hiking, but as his mind deteriorated, so did his body. We knew he wasn’t going to live forever.

Still, I took him out every day, even a walk around town, pushing him in the wheelchair, for the majority of the time. But boy did we take some journeys together.

Despite the progression of dementia with Lewy Bodies, we had a blast recreating memories.

Sometimes we would take the bus and Dad would tell me about the time he took the same bus journey 40 years ago and how everything had changed.

For his birthday one year, I got in touch with the local Rover owners group.

They brought over the exact model Rover that my Dad owned in the 1950s and we went for a drive.

Dad sat in the passenger seat touching the leather on the dashboard, saying “this feels just like my car, it smells the same.”

Tastes and smells

One of the things my Dad loved the most was his food.

As his illness progressed, I used to feed him at dinner times.

I’d still make sure it was foods that he loved though, those filling winter classics like steak and kidney pie, or toad-in-the-hole.

We’d pick up fish and chips and he’d say “this reminds me of the beach holiday we had in 1963.”

There are close links between taste and memory and we made the most of it.

As Dad’s current memory faded away, we made the most of the old memories that he had left.

Even the taste of a simple bag of sweets could bring Dad out of his shell to talk about a trip to the park when he was a child.

At the age of 84, Dad suffered a stroke and slipped away.

Despite his dementia, he’d had an excellent quality of life for over 10 years since being diagnosed.

All the memories that we talked about will always be with me and they are something to treasure.

We really made the most of that time and I learned so much.

All the little things matter, every time I smell fish and chips, I always imagine him on the beach.

Memory is a powerful thing.

https://blog.storiicare.com

Symptoms of Dementia with Lewy Bodies

Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is a common type of dementia estimated to affect more than 100,000 people in the UK.

“Dementia” is the name for problems with mental abilities caused by gradual changes and damage in the brain.

It’s rare in people under 65.It tends to develop slowly and get gradually worse over several years.

This page covers:

Symptoms of dementia with Lewy bodies

People with dementia with Lewy bodies may have:

problems with understanding, thinking, memory and judgement – this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
periods of fluctuating alertness alternating with periods of confusion or sleepiness – this can change over hours or days
slow movement, stiff limbs and tremors (uncontrollable shaking)
hallucinations (usually seeing or sometimes hearing things that aren’t there)
disturbed sleep, often with violent movements and shouting out
fainting spells, unsteadiness and falls

These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.

Read more about the symptoms of dementia with Lewy bodies.

Getting medical advice

See your GP if you think you have early symptoms of dementia, especially if you’re over 65 years of age.

If you’re worried about someone else, encourage them to make an appointment with their GP and perhaps suggest that you go with them.

Your GP can do some simple checks to try to find the cause of your symptoms and they can refer you to a memory clinic or another specialist for further tests if needed.

Read more about getting a dementia diagnosis.

Tests for dementia with Lewy bodies

There’s no single test for dementia with Lewy bodies.

The following may be needed to make a diagnosis:

an assessment of symptoms – for example, whether there are typical symptoms of dementia with Lewy bodies
an assessment of mental abilities – this will usually involve a number of tasks and questions
blood tests to rule out conditions with similar symptoms
brain scans, such as an MRI scan, CT scan or a single photon-emission computed tomography (SPECT) dopamine transporter scan – these can detect signs of dementia or other problems with the brain

Read more about the tests used to diagnose dementia.

Treatments for dementia with Lewy bodies

There’s currently no cure for dementia with Lewy bodies or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
therapies such as physiotherapy, occupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
psychological therapies, such as cognitive stimulation (activities and exercises designed to improve memory, problem-solving skills and language ability)
dementia activities, such as memory cafés (drop-in sessions for people with memory problems and their carers to get support and advice)

Outlook for dementia with Lewy bodies

How quickly dementia with Lewy bodies gets worse varies from person to person.

Home-based help will usually be needed, and some people will eventually need care in a nursing home.

The average survival time after diagnosis is similar to that of Alzheimer’s disease – around 6 to 12 years. But this is highly variable and some people live much longer than this.

If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.

Causes of dementia with Lewy bodies

Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.

These deposits are also found in people with Parkinson’s disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.

It’s not clear why the deposits develop and how exactly they damage the brain. It’s thought that part of the problem is the proteins affecting the brain’s normal functions by interfering with signals sent between brain cells.

Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.

NHS https://www.nhs.uk

More information

Living with dementia

Find dementia activities near you

Living well with dementia

Staying independent with dementia

Dementia activities

Looking after someone with dementia

Dementia and your relationships

Communicating with people with dementia

Coping with dementia behaviour changes

Care and support

Sources of help and support

Organising care at home

Dementia and care homes

Dementia, social services, and the NHS

Dementia and your money

Managing legal affairs for someone with dementia

End of life planning

Lewy Body Dementia learning to live with Lewy Body Dementia.

Approximate Lewy Body Dementia Phases, Symptoms and Considerations

Phase 1 Possibilities

Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

Increased daytime sleep: two-plus hours
Hallucinations
REM sleep disorder
Restless Leg Syndrome
Sense of smell diminished
Vision affected (clarity, comprehension and/or peripheral)
Hearing affected (clarity and/or comprehension)
Speech difficulty (word-finding, pronunciation, etc)
Physical coordination diminished
Parkinson’s disease diagnosis
Shuffling gait
Slowness of movement
Cog-wheeling (smooth motions now jerky)
Posture altered (stooping or leaning)
Chronic runny nose
Myoclonic jerking
Comprehension issues
Ability to learn new tasks affected
Short term memory impacted
Loss of initiative, interests
Alertness varies
Thinking/learning/ problem solving difficulties suggest dementia
Mood: Depressed/Anxiety
Fluctuations in mood
Able to engage independently in leisure activities
Handwriting is affected (often smaller or less legible)
Impairments with financial responsibilities
May still be able to maintain employment
May be able to hide (mask) symptoms
Socialization still possible
Driving skills affected
May accuse spouse of infidelity

Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention. Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

Balance and stability diminished
Ambulates/transfers without assistance
Increased risk for falls/requires walker
Occasional episodes of incontinence (1 or 2 a month)
Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
Leaning to one side when standing, walking and seated
Parkinson’s symptoms controlled with medication
Able to perform most ADLs without assistance

Increased difficulty with:

Finding words (aphasia)
Organizing thoughts
Reading & comprehension
Following TV programs
Operating home appliances
May be able to administer own medications
Able to follow core content of most conversations
Able to be left unsupervised for two or more hours
Delusions more firmly held
Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
Depressed mood
Paranoia
Agitation

Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home. Caregiver needs regular planned respite to maintain their own health. Caregiver health issues often arise and require health care. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

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

Phase 4 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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Continuous assistance with ambulation/transfers
High risk for falls
Needs assistance with all ADLs
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
Requires 24-hour supervision
May need electronic lift recliner chair
Parkinson’s symptoms need regular medical monitoring
Autonomic dysfunctions need regular medical monitoring
Choking, difficulty swallowing, aspiration, excessive drooling
Increased daytime sleeping
Hallucinations prevalent but less troublesome

Phase 5 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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)