Understanding Dementia

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1 Barnet, Enfield and Haringey Mental Health NHS Trust Understanding Dementia Information for people living with dementia and their carers. Page

2 What is Dementia? Dementia is a term used to describe a broad range of signs and symptoms which involve a decline in a person's mental ability. This decline is usually the result of damage caused to the brain by specific brain diseases, or by brain cells wearing out faster than would be expected with normal aging. Dementia is a progressive condition. Who gets Dementia? The risk of developing dementia increases with age however the majority of older people do not develop the condition. It is not inevitable that because someone is old they will have dementia. How common is it? It is estimated that there are approximately 7,500 people across the three boroughs of Barnet, Enfield and Haringey with a diagnosis of dementia. This is predicted to grow by approximately 20% by The most common form of dementia is Alzheimer's disease, which is about 60% of all cases. It affects one person in 20 aged over 65 and one person in five over the age of 80 and men and women are equally affected. What causes dementia? The cause is still unknown but there are different theories around a combination of genetic and environmental factors. Page 2

3 Types of Dementia Alzheimer's disease; this is the most common cause of dementia, brain cells die as a result of the progression of the disease and there are also changes within the chemistry and structure of the brain. Alzheimer's disease tends to affect cells across the brain as opposed to a specific area. This means that over time the person will tend to experience a range of difficulties. Vascular dementia; this is the second most common form of dementia and is caused by problems with blood flow to the brain. There is more known about this type of dementia which usually occurs following a stroke or over time following a series of small strokes which causes the brain cells to be deprived of oxygen. People with high blood pressure, or high cholesterol or diabetes or a combination, are at greater risk of developing vascular dementia. Dementia with Lewy bodies (DLB); this form of dementia shares characteristics with both Alzheimer's disease and Parkinson's disease and accounts for about 4% of all cases of dementia in people over 65 years of age. It gets its name from tiny spherical structures that develop in the nerve cells, which disrupt the brain's normal functioning. Fronto-temporal dementia; this is a rare form of dementia and covers a range of conditions including Pick's disease. It is caused by damage to the frontal lobe and/or temporal parts of the brain - the areas which are responsible for our behaviour, emotional responses and language skills. Page 3

4 What are the symptoms of Dementia? Symptoms may vary from person to person as people respond to what is happening to them in an individual way. Memory loss; difficulty remembering, especially things that happened 5 minutes ago but are able to give clear account of events much further back in time. Disorientation; people with dementia often become disorientated and confused regarding the time of day, month or year, where they are or how to navigate around familiar places Difficulties with familiar tasks; people with dementia may reach a stage where they are unable to start or complete everyday tasks; getting washed and dressed or making a cup of tea. Communication; people with dementia can find it difficult to find and pronounce the words they want to use. There can also be difficulties understanding what others are saying. Difficulties with perception; the ability to make sense of the world' is often distorted with dementia. Although eye sight may be good, the brain's ability to accurately interpret what is being seen may be impaired, resulting in confusion and disorientation. Changes in making judgements; in dementia the specific areas in the brain responsible for making judgements and decisions can be affected. These changes can result in a decreased ability to reason, plan and organise even simple everyday tasks. Loss of initiative; people with dementia may become more passive over time and seem to lose interest in activities they used to enjoy. This may be due to the activities needing to be presented slightly differently to allow for the changes that dementia has made in someone's abilities. Changes in behaviour; at some stage the decline in mental abilities may be accompanied by changes in behaviour. Dementia can cause people to become confused, suspicious or withdrawn as well as fearful and aggressive. These changes can be challenging for family carers to know how best to respond. What can someone experiencing dementia do to help themself? Receiving a diagnosis of dementia can be a difficult time. Having time and someone supportive to talk with can be helpful. Maintaining good general health through a healthy diet and regular exercise is important too. Keeping active and staying involved with as many aspects of life can help stimulate cognition, maintain social contacts, and maintain a sense of well being which is protective against developing depression. Page 4

5 More information about services to support someone diagnosed with dementia and family carers is available locally. If you are attending your local Memory Service, please ask any member of the team for this information. What treatments are available? Medication: There is no medication available which will reverse dementia but some medication is available to help slow down the process. These do not work for everyone and a thorough assessment is required at a Memory Service to assess whether someone will benefit. Memory treatment drugs which treat the symptoms of Alzheimer's disease in the early to middle stages may help to stabilise symptoms for a while. These include Donepezil (Aricept), Rivastigmine (Exelon) or Galantamine (Reminyl). Vascular dementia may need a combination of drugs to control high blood pressure, high cholesterol and/or to thin the blood to prevent further blood clots forming. People with dementia may also require other medication from time to time like antidepressants, tranquillizers and or sleeping tablets or a combination depending on individual needs. Should you experience any side effects from your medication please contact your local memory service or your GP. Other treatments available Your local memory service may provide a range of post diagnostic interventions that you can request further information on. Having a clear diagnosis can help to; Plan for the future; financially and legally Ask about access to new treatments Rule out or identify other health problems Identify where to go for further help and support Page 5

6 What can partners, friends and relatives do to help? It is important that relatives and carers look after themselves by finding someone to confide in, or perhaps spend time with their relative whilst they go out. It is also important to try not to feel guilty about taking time out'. It is essential to find ways to relax, as this in turn supports relatives and carers to continue to care for the person with dementia. Useful tips Stay calm, the person experiencing dementia may be in distress and not able to resolve situations for themselves Respect the person's space, some people like to socialise and some don't Give reassurance, speak slowly and kindly Encourage him/her to talk or communicate with you Listen and look for any possible meaning behind what is being said and communicated. Look for a cause of certain behaviour. For example, wandering' may be due to being separated from someone or something familiar, boredom, looking for the toilet, or the room may be too noisy/hot etc Driving If you have been given a diagnosis of dementia the DVLA and your insurance company must be informed. A diagnosis of dementia does not mean you necessarily need to stop driving. Each case is assessed individually by the DVLA. Advanced Decisions You may consider planning ahead for the future and document your preferred choices. Page 6

7 Useful Organisations Alzheimers Society Barnet and Haringey Enfield Age UK (formally Age Concern) Age UK is a charity that supports everyone over 50 in the UK. It also provides day care and information. As well as campaigning on issues such as pensions and age discrimination to influence government policy. Barnet Enfield Haringey Dementia UK Provides information, advice and support to carers of people with dementia Admiral nursing DIRECT A national helpline providing support and advice to family carers, people with dementia and health and social care professionals It may be possible to access and admiral nurse through your memory service. Please ask for further details from your memory service. Carers UK Carer UK aims to help anyone who is caring for a sick or disabled, elderly or frail friend or relative at home Page 7

8 You can ring for a translation Monday - Friday 9.00am pm. Please give this number: and also for Audio, Large Print and Braille, call now on: Produced By: Date of Publication: Page 12Review Date: Reference: Communications 25/11/ /11/2015 lc