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.
In this very large post, you’ll find masses of information about the most common types of dementia, the symptoms and the causes for each type.
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 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.
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.
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.
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.
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.
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 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.
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.
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 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.
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.
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
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.
- Slow movements
- Loss of balance or coordination
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
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.
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 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:
- 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.
- 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.
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.