About Dementia
How many people have a diagnosis of dementia in the U.K?
What are the facts about dementia? How many people have a diagnosis of dementia in the U.K? Who does it affect?
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What is dementia?
What does the term dementia actually mean? What problems are associated with dementia? What are the signs that someone might have it?
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What's the difference between the different types of dementia?
What are the different types of dementia and how are they actually different?
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How should we get an assessment / find out if this is dementia?
What should you do if you suspect you or a family member has dementia?
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We have been told its dementia, now what?
Once the diagnosis is made, how do I cope with that? What does it mean? Who should I tell?
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What support is available?
Once you have received a diagnosis of dementia what help and support is available? How can you access services and how can you find out what services are available in your area?
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How can Admiral Nurses help?
To find out what an Admiral Nurse is and how an Admiral Nurse might be able to help you and your family.
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How do I find out if I have Admiral Nurses working in my area?
To find out if an Admiral Nurse service is currently available in the area the person with dementia you are caring for lives.
Read on....
What about Dementia UK, what do they do?
To find out more about the work of the charity Dementia UK and find out exactly what the charity does.
Read on ...
How can I get involved in the work of Dementia UK?
Some carers feel passionately that they want to be involved in the work of Dementia UK. They feel driven to explore how they can be involved in improving services and standards of care for others affected by dementia.
To find out about how you can get involved read more ...
To find out about how you can help us
Read on ...
To find out more information about Uniting Carers and how you can become involved.
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A number of factsheets have been produced
Information For Carers Of People Who Are Forgetful Or Confused
This factsheet provides general advice about services and entitlements for carers and people with dementia.
It covers a wide range of topics from financial matters to continence advise.
Read on ...
Eight care giving maxims for dealing with perplexing behaviours
By Barbara Pointon
"Over the years, I've arrived at eight care giving maxims - I only wish that, as a new carer, someone had given them to me from the outset. Similarly, all those who offer care at home or indeed in any care setting might find them useful".
Read on ...
Factsheets from other organisations
Alzheimer's Society factsheets
The Alzheimer's society has produced many wonderful and informative fact sheets over the years. Click here to access the factsheets.
How many people have a diagnosis of dementia in the U.K?
There are about 820,000 people in the UK with dementia (Alzheimer's Research Trust 2010). Some will be people living with an undiagnosed dementia.
- Dementia has no gender barriers and affects both men and women.
- Dementia mainly affects older people. The longer a person lives the higher the risk of developing a type of dementia.
- There are 15,000 people in the UK under the age of 65 who have dementia. The fact that dementia can affect younger people is something that can be over looked by families, the person themselves, even professionals can be slow to consider dementia as a possibility with younger people.
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What is dementia?
Dementia is a term that is used to describe a collection of symptoms including memory loss, problems with reasoning and communication skills, and a reduction in a person's abilities and skills in carrying out daily activities such as washing, dressing, cooking and caring for self.
Memory loss - this can be one of the first symptoms that people notice. The observations people report include - noticing their loved ones forgetting things that have happened earlier in the day, getting confused about messages and who people are, getting lost whilst out and about, repeating themselves, and appearing not to be paying attention or following conversations.
Problems with communication - Some people experience problems with expressing themselves, talking and understanding things. They get confused about words and might use the wrong words for common things and mix words up. Reading and understanding written text can become problematic.
There are a number of different types of dementia the most common being Alzheimer's disease, vascular dementia, Fronto temporal dementia and Dementia with Lewy bodies.
Some people get diagnosed as having mixed dementia; this is when the presentation shows the person to have elements of more than one type of dementia.
Dementia is a progressive condition, which means the symptoms will gradually get worse. This progression will vary from person to person and each person will experience dementia in a different way. Although the person will have some of the above symptoms, the degree to which they affect an individual will vary and not all people will have all of these symptoms.
What's the difference between the different types of dementia?
Mild Cognitive Impairment (MCI)
Sometimes a doctor will assess and diagnose a person as having Mild Cognitive Impairment (MCI). This diagnosis is given when the person has mild memory problems but a diagnosis of dementia cannot be given, as the symptoms do not warrant this diagnosis.
Examples might include a person becoming aware that their memory is not functioning as effectively as normal / noticing they are becoming forgetful / having difficulty concentrating.
Having a diagnosis of MCI does not mean you will go on to develop dementia.
Alzheimer's Disease
Alzheimer's disease is the most commonly diagnosed type of dementia affecting around 417,000 people in the UK. It was first recognised by the German neurologist Alois Alzheimer, hence how Alzheimer's disease got its name. Alois Alzheimer noticed ‘plaques' and ‘tangles' in his subjects' brain which were causing brain cells to die faster than they would in normal ageing.
Alzheimer's is a gradually progressive form of dementia, this means the illness gradually gets worse over time. The first signs are commonly forgetfulness of recent events, repetition, confusing things or getting lost. Signs of depression or irritability may also be seen together with a loss of interest and lack of initiative. Over time the person may lose more and more of their every day skills and abilities and may eventually be unable to perform the simplest of every day tasks without encouragement, support and supervision.
Families may notice a person becoming more and more forgetful (for example) often people cannot pinpoint a day they first noticed "something was wrong" moreover they gradually become aware that a person is experiencing what might be a dementia.
It can be some months or years before family members fully recognise the extent of the deterioration in the person with dementia.
Down's Syndrome
People with Down's Syndrome are at an increased risk of developing Alzheimer's disease.
Vascular Dementia
Vascular dementia is the second most commonly diagnosed dementia (after Alzheimer's disease).
The brain, like all other cells in the body needs a regular supply of blood and oxygen. If this supply is affected in any way the cells suffer damage and may die. When these brain cells no longer function properly/ die a person may develop Vascular Dementia.
Some areas of the brain may be more affected than others, and as a result, some areas of the brain may remain relatively unaffected. People with Vascular Dementia as a result may be aware of problems they are experiencing and this can lead to an increased risk of depression.
As Vascular Dementia affects different areas of the brain of each person may have different symptoms.
The symptoms are similar to those of other types of dementia however the way the illness progress is very different.
Vascular Dementia often progresses in a step like fashion; that is to say, symptoms may remain at a constant level for a period of time and the illness progresses in obvious steps rather than a gradual reduction in skills/ abilities as with Alzheimer's Disease.
There are different types of vascular dementia:
- Stroke-related dementia, Small vessel disease-related dementia
- Vascular dementia and Alzheimer's Disease (mixed dementia)
Who is more at risk of developing Vascular Dementia?
People with conditions such as high blood pressure, heart problems, high cholesterol and diabetes are more at risk of developing vascular dementia. It is therefore recommended that these conditions are identified and treated as soon as possible.
Fronto Temporal Dementia / Frontal Lobe Dementia (FLD)
People who are affected by FLD may not have the type of memory problems normally associated with other types of dementia. A person with FLD may behave very differently as a result of their illness. For example a person with FLD who was previously very quiet and unassuming might become loud and aggressive and use offensive language.
Some people become withdrawn, while others may become disinhibited or even sexually inappropriate and may exhibit sexual behaviour in public.
Whenever such dramatic changes of personality occur a diagnosis of FLD should always be considered.
Dementia with Lewy Bodies
Dementia with Lewy Bodies takes its name from abnormal collections of protein, known as Lewy bodies, which occur in the nerve cells of the brain. In addition to the symptoms of Alzheimer's disease, people with Lewy Body Dementia are likely to experience hallucinations (seeing things that do not exist).
The condition tends to fluctuate and can include Parkinson type symptoms such as falls / difficulty walking. Dementia with Lewy Bodies is associated with Parkinson's Disease however it can and does occur without this.
Many people with this type of dementia are very sensitive to neuroleptic medication, which can lead to severe side effects and even death.
This disease often progresses more rapidly than Alzheimer's disease.
How should we get an assessment / find out if this is dementia?
If you suspect you or a person you know may have a type of dementia it is essential you get a diagnosis as soon as possible.
There are many conditions or situations that can cause confusion and symptoms similar to dementia.
The person who is experiencing the problems must see their GP as soon as possible.
The GP will be able to refer you to a specialist for an assessment.
The following conditions can cause similar symptoms to those of dementia but may be reversible and should always be explored.
- Chest and urinary infections
- Infected pressure sores
- Severe constipation
- Depression
- Side effects from medication
- Taking medications incorrectly or taking medication that has not been prescribed
- Vitamin and thyroid deficiencies
- Brain tumours and normal pressure hydrocephalus
- Syphilis
- Sudden changes such as moving house or bereavement
- Poor sight or hearing
- Alcohol (even in small amounts)
A full physical examination should take place as part of the assessment. This may include an assessment of heart and lung functioning and will include blood pressure, full blood count, vitamin B12 and foliate testing, glucose testing, thyroid testing and a mid stream urine assessment.
So far there is no medical test for dementia. A diagnosis is made by excluding other conditions. It is therefore essential that the person's carers, friends and relatives be invited to give a history of the problems.
The assessment process will vary depending on the services that are available in your area. You may have a memory service in your area and your GP may refer you for further assessment and diagnosis.
Other areas do not have a dedicated memory service and the GP will refer to your local mental health service and someone from the mental health team will contact you to arrange an assessment.
Some GPs refer to neurologists, who are specialists in disorders of the brain, for assessment. These professionals will often conduct a home visit to assess the person in their own home.
The actual assessment will include the above-mentioned tests and whoever is making the diagnosis will take a detailed history. An assessment of a person's behaviours or abilities might be made and referral to a day hospital or to an occupational therapist might be suggested.
There are a number of scans which can be conducted which help the diagnostic process, and the professional making the diagnosis might refer you for a scan during the assessment process.
You may have Admiral Nurses working in your area and your GP / psychiatrist will be able to provide you with the information you need about how to access this service.
We have been told its dementia, now what?
Talking to people
Talking to people and accepting that you or a loved one has a diagnosis of dementia can be very difficult. Many carers are reluctant to tell/ discuss the diagnosis with the person with dementia themselves. The person with dementia might well know that something is wrong and may be worried about the changes they are noticing in themselves.
It is important that once a diagnosis is reached the person has the opportunity to discuss this diagnosis, what it means, what the future might hold and the types of support they might need. The person with the dementia should be informed of this diagnosis, ideally when a family member or close friend is present, by the professional who has completed the assessment, or the professional who knows the person best.
People should be allowed time to process what this diagnosis means and be encouraged and allowed to ask questions about what it means. It is a good idea to tell close family and friends about this diagnosis, however you might want to consider who else to tell.
Some people (especially when the person with dementia lives alone) inform a close neighbour so that they are aware and can provide some support for the person with dementia.
Talking to young children can be difficult. Children however, are normally very aware that something is wrong and are normally easily able to accept the diagnosis for what it is and not let if affect their relationship with the person with dementia.
Families of younger people with dementia will face different challenges and may want to get professional help/ support and advice about dealing with the dementia and coping with this diagnosis - help lines such as Admiral Nursing DIRECT will also be able to provide support and advice. Admiral Nursing DIRECT 0845 257 9406
Medicine
A number of medications are available which can help to slow down the deterioration.
The use of these medications was recently restricted to people whose dementia is in the mid-stages. This is something that you should discuss with the person making the diagnosis.
What support is available?
Support for the person with dementia
Different areas have different types of support available. The types of support may include:
- Day Hospital - where the assessment will be made, people may be invited to attend 1 / 2 days a week for a period of time whilst assessment is made and the person receives the diagnosis and some type of follow up support.
- Day Centres - once assessment is made some people attend day centres. The number of days a person can attend and the types of centre will vary from area to area.
- Support Groups - some services offer support groups for people who have a recent diagnosis.
- Alzheimer's Cafés - groups in community settings which often invite carers and people with dementia to attend together as well as receiving support and advice be in a safe space and enjoy a café-like experience together.
Support for family carers
- Carers Groups - are a great way of meeting other carers and sharing experiences. Carers Groups also enable you to meet "others in the same boat".
- Social Services - can do a range of things, putting in services, arranging for carers to come into the person with dementia's home to assist with day to day tasks, advising on benefits and helping make claims.
- Age Concern - will be able to help with things such as benefits / attendance allowance claims, managing budgets and money issues, plus much more. For more information about Age Concern click here.
- Factsheets and Books - a huge amount has been written about dementia and it is natural that you will want to read up about this new diagnosis.
A word of caution however, do not read everything and start to worry about how you are going to cope with things that the books say might happen, you need to deal with things as they happen, spend time focusing on what you are dealing with now, read about that and ways to cope with that and worry about tomorrow, tomorrow.
How professionals can help
The range of professionals working in the health service is vast and diverse and you could come into contact with such a huge number of people it would be very difficult to list all the possible people you might come into contact with and attempt to outline what they do.
Here is a list of some of the professionals you will / may come into contact with:
- Family Doctor - For most people the family doctor is the first professional they talk to regarding concerns about their own or a loved one's memory problems. Your family doctor will start by doing a few simple tests and a blood test; they will then often make a referral to a specialist dementia service.
- Memory Clinic - If a memory clinic is operational in the area where the person with the suspected dementia lives the family doctor will ask for an appointment for assessment. It is important to note that not all areas have memory clinics and some clinics have waiting lists.
- Psychiatrist - Your family doctor may ask for a psychiatric assessment. This may be alarming, as contact with a psychiatrist is something most people don't have everyday and even the thought of a psychiatrist coming to assess you / your loved one can produce anxiety. The reason the psychiatrist makes the assessment, in some cases, is that dementia although not a psychiatric illness as such, has historically been linked to mental health services. Older Age Psychiatrists are specialists in dementia.
- Community Mental Health Nurse / CPN Community Mental Health Nurses, also known as Community Psychiatric Nurses (CPNs), are mental health nurses who work in the community. They may be involved to provide treatment, care and support. They normally carry out assessments of people at home and can advise people with dementia and their carers on ways of coping, and of improving their health and quality of life. They do not carry out physical nursing tasks.
- Psychologist - Psychologists work within the same team as the Psychiatrist and Community Mental Health Nurses as well as working within memory clinics and Gp practices - a psychologist may be involved as part of a team approach to making assessment.
- Admiral Nurse - You may have an Admiral Nurse service in your local area. Admiral Nurses can work with you if the person with dementia that you care for lives in the area that their service covers. However if you do not live in an area with a service you can ring the national helpline number for support.
Admiral Nurses work with family carers and provide emotional and practical support and advice. You can refer yourself to the service, alternatively your family doctor / psychiatrist / CPN etc might suggest and make a referral to the service for you. Admiral Nurses are trained mental health nurses who have specialised in dementia care.
How do I find out about support available in my area?
- Ask your GP - Your GP will be able to advise you about services that are available and as your general practitioner should be kept informed about services and support you may need.
- Ring your local social services - your local social services will be able to tell you about services as well as refer you to them. A member of the social services team will come out and meet you and the person with the dementia to discuss the support and services available to you.
- Contact the Alzheimer's Society - who will be able to provide information about services in your area.
How can Admiral Nurses help?
Admiral Nurses are specialist dementia nurses, working in the community, with families, carers and supporters of people with dementia.
The Admiral Nurse model was established as a direct result of the experiences of family carers. Admiral Nurses are named after Joseph Levy, who had dementia. He was known by his family as ‘Admiral Joe' due to his keen interest in sailing.
Admiral Nurses:
- Work with family carers as their prime focus
- Provide practical advice, emotional support, information
and skills - Deliver education and training in dementia care
- Provide consultancy to professionals working with people
with dementia - Promote best practice in person-centred dementia care
How do I find out if I have Admiral nurses working in my area?
Admiral Nursing DIRECT
0845 257 9406
Admiral Nursing DIRECT is a telephone information and support line for family carers, people with dementia and professionals.
The service is also available by email: direct@dementiauk.org
Admiral Nursing DIRECT is delivered by experienced Admiral Nurses and has been developed in response to the rising number of enquiries being received by Dementia UK.
How can I get involved in the work of Dementia UK?
To find out about how you can help click here.
To find out more information about Uniting Carers and how you could become involved click here.