I have been diagnosed with dementia – what are the implications?

Diagnosis - Dementia, the rates are Alarming

People repeatedly say that they feel lonely and hopeless following a diagnosis of dementia. In fact there are over 800,000 people in the UK with a form of dementia, 665,065 in England, 18,862 in Northern Ireland and 44,598 in Wales.

1 in 1,400 people aged 40-64 have dementia, with the incidence rising in later years to 1 in 100 of 65 – 69 year olds, 1 in 20 of 70-79 year olds and 1 in 6 over 80 year olds.

Two thirds of people with dementia are women[1]. We know there are many people with signs and symptoms of dementia who are yet to receive a diagnosis. NHS England has set the first ever national priority to improve diagnosis rates to ensure two thirds of people with dementia will receive a diagnosis and on-going support by 2015. This will be an increase in the current average of 45%[2].

In this article I will be answering the most frequently asked question about the implications of a diagnosis of dementia.

Dementia FAQs

1.      What is the difference between dementia and Alzheimer’s disease?

2.      Is memory loss a natural part of aging?

3.      What are the signs and symptoms of dementia?

4.      How do I get a diagnosis?

  5.      Is there any treatment?

  6.      Will I need someone to look after me?

  7.      My relative is now my carer who will look after him/her?

1.                  What is the difference between Dementia and Alzheimer’s disease?

The word dementia is an umbrella term for different types of progressive cognitive impairment. Alzheimer’s disease is the most talked about type of dementia. It is caused by certain types of chemicals in the nerve cells of the brain working in an abnormal way. We still do not know what causes Alzheimer’s disease.

Vascular Dementia and TIAs

Vascular dementia is caused by tiny clots getting lodged in the circulation of the brain and these are sometimes known as Trans Ischaemic Attacks or TIAs for short. We know that high blood pressure, high cholesterol levels, diabetes, obesity, smoking and a history of stroke or heart disease can increase the risk of getting vascular dementia.

Lewy Body Dementia

A less common form of dementia is called Lewy Body dementia and it is caused by ‘Lewy body’s’ which are a type of protein that build up in the nerve cells. It is closely associated with Alzheimer’s disease and Parkinson’s disease. 

Fronto-temporal Lobe Dementia

Fronto-temporal lobe dementia is very rare and commonly affects people under 65 years of age. It covers a range of conditions including Pick’s disease and motor neurone disease. 

All forms of dementia are caused by damage to the frontal and temporal lobes of the brain giving rise to problems associated with personality, emotions and behaviour.

2.                 Is memory loss a natural part of aging?

As we get older our ability to learn new skills and engage with others can change. We can become slower, more thoughtful and considered in our day to day lives. Memory loss that affects our day to day life, for example with the management of finances, shopping, thinking and planning for day to day activities such as socialising, holding a conversation, and our behaviours, is not a normal part of aging. 

3.                 What are the signs and symptoms of Dementia?

All types of dementia are slowly progressive. To start with the affected person may be able to compensate for difficulties, especially if they live with another person who knows them very well. Indeed, we tend to compensate for each other without realising it.

The most recognisable symptom of dementia is short term memory problems. Examples of this are not being able to recall where things are kept even when they have been in the same place for many years or not being able to navigate a familiar environment. Other problems people may have are managing money, finding the right words or using more unusual words when speaking, reading and following a TV programme, socialising in groups, getting unreasonably cross or frustrated.

4.                 How do I get a diagnosis of Dementia?

If you are concerned that you have the symptoms of dementia talk to someone you know well and ask them to accompany you to see your GP. Some types of memory problem can be caused by a physical illness and these include infections, diabetes, thyroid problems, and anaemia or brain tumours. Your GP will firstly run a series of physical checks including blood tests, chest x-ray, blood pressure and weight measurement and sometimes a scan. If these tests are negative your GP will ask you to complete a ‘paper assessment’.

This assessment varies depending on where you live but will ask things like your name and address, to recall a sequence of numbers, remember a sentence, write a sentence and draw a diagram. It takes about 20 minutes to complete. Make sure you take glasses and wear your hearing aid so you are able to function at your highest level. The assessment is scored and your GP will make suggestions about the next steps when he has your score and all related physical test results.

If your test results show that you score is not within the normal limits you will be given the choice to attend an NHS ‘memory clinic’ or attend a private diagnostic clinic. The memory clinics are usually part of the local mental health services and you will be seen in an outpatient type of environment. Here you will meet a psychiatrist, a specialists nurse and sometimes a psychologist. They will ask you to complete another paper assessment and will ask your permission to speak to someone who knows you very well. You may then be sent for a scan and the type of scan will vary depending on who you see in the memory or diagnostic clinic. You will be asked to return to the clinic to receive a diagnosis. It is best to ask someone who knows you well to attend all these appointment with you so you have some support and someone to talk to about the results of your tests.

5.                 Is there any treatment for Dementia?

Although, as yet, we have no cure for any type of dementia there are treatments available. For people with a diagnosis of dementia there are medicines called cholinesterase inhibitors.

Cholinesterase Inhibitors

The most well-known of these is a tablet called Aricept. This is taken daily and can help alleviate some of the symptoms of Alzheimer’s disease and help level mood. For some people there is no noticeable difference but there is a growing body of evidence that demonstrates that these drugs are likely to slow the progression of Alzheimer’s disease, assist with thinking and planning and with regulating mood.

For people with vascular dementia it is very important to have regular blood pressure and cholesterol checks, and to take prescribed medication as advised by their doctor. 

Keeping Fit

Research also suggests that keeping physically active can lessen the effects of the symptoms that cause falls and balance problems and stimulate a sometimes failing or abnormal appetite. Healthy eating is recommended and you may be advised to take a monitored course of vitamin supplements. 

Cognitive Stimulation

Recent research has shown that Cognitive Stimulation can help to maintain the activities of daily living, assist with decision making, and improve socialisation and self-esteem. Cognitive Stimulation can be delivered in groups or a programme can be tailored for an individual that can be based on life story/time line and biography[3]. Creative therapies like reminiscence, art and music all have well-researched evidence base to support socialisation, decision making, feelings of well-being, improved self-esteem, improved communication skills and interaction with others.

Care in the Future

Clinical trials are currently being undertaken to develop medication for people with Alzheimer’s disease that could possible modify the progression of the disease[4].  The results of this research will be available in 2-3 years’ time. Qualitative research is being completed to examine the care and support of people with dementia and their families in areas such as general hospitals, people’s own homes and the use of psycho-social interventions like the creative arts and talking therapies.

6.                 Will I need someone to look after me?

When a person has a memory problem and is diagnosed with a type of dementia their relationship with the people close to them can change. This may be because family members have been helping for some time and this has gone unnoticed or the affected person may have felt that they could manage without help. Being able to talk about what your symptoms are and your diagnosis will help others to understand any difficulties you have and they will be able to support you in the future. When you receive a diagnosis the memory clinic or diagnostic clinic will be able to support you with information about the type of dementia you have, treatments available and signposting to services.

It is wise to have regular health checks with your GP to monitor your physical health for example, blood pressure, weight, dietary and activity advice. You may find you require more help from family members, which can be difficult for busy families so try to be open to suggestions about help from outside the family. There is help available via your local social services, the Alzheimer’s society, Age UK and a variety of charities and independent agencies and services.

Are the Staff trained in Dementia Care?

Always check with the service that they train their staff in dementia care and require completion of a Disclosure and Disbarring Record check (previously Criminal Record Check). You will be entitled to a non means tested benefit and should put in place a financial Lasting Power of Attorney to ensure you are safeguarded financially and have somebody of your choice to oversee your finances. There is also a Health Lasting Power of Attorney which will help you to discuss and formerly record the sort of care you would like in the future.

7.                  My relative is now my carer but who will look after him/her?

Caring for a person with dementia can be a very emotional experience. The relationship can change from a husband, wife, daughter, son without it being acknowledged. This can cause all sorts of different feelings, for example, frustration, sadness, anger and hopelessness.

Research shows that caring for a person with dementia can affect the carer’s physical and mental health so it is important that your carer has regular health checks with their GP, which should include urine testing, blood pressure, weight, a medication review and a discussion about how their caring role/life style is affecting the carer. Some carers benefit from joining a local carers group where experiences of caring and hints and tips about caring can be shared. There are often social benefits from joining this sort of group too.

Individual advice can be obtained from help lines for example the Alzheimer’s Society[5] and Admiral Nurse Direct[6]. Practical advice about benefits and other financial matters can be obtained from the local Citizens Advice Bureau or from an independent financial consultant. Practical advice about health related matters for example safely helping a person to move, having some time for your carer to pursue their own interests/work should be discussed with their GP who will be able to signpost them to the right service or professional.