Thinking Through Dementia a brief guide

Transcription

1 2 (painted by WH - a person with dementia) Thinking Through Dementia a brief guide Be my friend, for I need one but do not be my manager. And remember me, as my life and identity erode, as a person, not a case J. Ossofsky (1993)

2 3 Auguste Deter Auguste was the first person to be diagnosed with Alzheimer s Disease by Dr Alois Alzheimer. This little booklet arose out of a suggestion from Glenda Livesey, a member of staff at Olivet. Glenda thought it would be useful for families and friends of people who are trying to come to terms with a loved one who is developing dementia to have a few tips on what it is, what to expect - and how to help. We thought, A great idea, so here it is. ALZHEIMER S DISEASE 4 What is Dementia? Dementia is a term used to describe the various symptoms and effects of a number of diseases that bring about the loss of nerve cells in the brain and usually result in some loss of brain function. First clinically described in 1906 by German neuropathologist Alois Alzheimer, this is the most common cause of dementia. It is not intended to be a definitive and complete treatise, merely what it says on the tin - a brief guide; an overview and some suggestions. For those who want to go into more detail there are some suggestions for follow-up at the back. Apart from our professional experience in working for and with people with dementia my wife, Christine, and I have had personal experience of coming to terms with trying to help a loved one through dementia, so we do know how hard it is. I hope this might help, a little. Chris Furniss Two proteins (Amyloid and Tau) build up, on, between and in the neurons ( inclusions ) and destroy them. There is no cure but some drugs can slow down the progress of Alzheimer s Disease in some people, improving quality of life for longer.

3 VASCULAR DEMENTIA 5 This is the second most common form of dementia and is a disease of the blood vessels. Interruptions in the supply of blood to nerve cells in the brain can lead to destruction of cells. In Vascular Dementia interruptions are commonly caused by TIA s - mini-strokes (it actually means Transient Ischaemic Attack). As with Alzheimer s Disease, there is no cure, but because it is a disease of the blood vessels progression can often be slowed by reduction of fatty foods, lowering cholesterol and blood sugar, exercise and a generally more healthy life style. OTHER FORMS OF DEMENTIA INCLUDE: Dementia with Lewy Bodies Fronto Temporal Dementia (& Picks Disease) Creutzfeldt Jakob Disease (CJD) It is, of course, quite possible to develop two or even more forms of dementia at the same time. Although it is possible to develop dementia younger in life, incidence of dementia rises with age. The reason there are so many more people with dementia now than in the past is that we are living much longer. Roughly one in a thousand will develop dementia below 65 years. Between 65 and 80 it is one in a hundred and over 80 years it is one in five. Above 90 it rises to about 30%. Thinking positively of course, it means that four out of every five who reach 80+ and two thirds of those over 90 will not develop dementia. WHAT CAUSES DEMENTIA? 6 The simple answer is: we don t yet know! All dementias result from the death of nerve cells and / or communication loss among these cells. The human brain is a complex and very intricate machine and many factors can interfere with its functions. Researchers have uncovered many of these factors, but they have not yet been able to fit these puzzle pieces together in order to form a complete picture of how dementias develop. Some types of dementia, such as Alzheimer's Disease, Lewy -body Dementia, Parkinson's Dementia, and Pick's Disease, show abnormal structures called inclusions in the brain. Researchers suspect these play a role in the development of symptoms, but that role is unknown. Some of the inclusions may simply be a side effect of the disease process that leads to the dementia rather than a cause of the disease. Genes clearly play a role in the development of some kinds of dementia. However, in Alzheimer's Disease and many other disorders, the dementia usually cannot be tied to a single abnormal gene. Instead, these dementias appear to result from a complex interaction of genes, lifestyle factors, and other environmental influences.

4 RISK FACTORS FOR DEMENTIA 7 AGE (p5). The risk of developing most types of dementia increases with age. GENETICS (family history). Researchers have discovered several genes that increase the risk of developing dementia. LIFESTYLE Studies indicate that smoking can significantly increase risks of mental decline and all dementias. Smokers have a higher risk of vascular disease & therefore Vascular Dementia. Large amounts of alcohol appear to increase risk. ATHEROSCLEROSIS (thickening of arteries). Interferes with delivery of blood to the brain which can lead to strokes. CHOLESTEROL High density of the bad cholesterol lipoprotein (LDL) greatly increases risk of Vascular Dementia. PLASMA HOMOCYSTEINE (an amino acid). Is a strong risk factor in Alzheimer Disease (AD) & Vascular Dementia (VD). DIABETES Increases risk of both AD and VD. DOWN SYNDROME Studies indicate that most people with Down Syndrome develop characteristic AD amyloid plaques and neurofibrillary tangles (see p4) by the time they reach middle age and many will develop symptoms of dementia. How can we reduce the risk of developing dementia? CAN DEMENTIA BE PREVENTED? 8 Although there are no guarantees, research suggests there are a number of factors that help prevent or delay the onset of dementia in some people. For example, studies have shown that people who maintain tight control over their glucose levels tend to score better on tests of cognitive function than those with poorly controlled diabetes. Several studies indicate that people who regularly engage in mentally stimulating activities, such as social interactions, chess, crossword puzzles, and playing a musical instrument, significantly reduces the risk of developing Alzheimer's Disease and other forms of dementia. Other positive actions include lowering homocysteine (amino acids), lowering levels of cholesterol, lowering blood pressure, exercise, education, controlling inflammation, and doctors will sometimes prescribe some non-steroidal anti-inflammatory drugs (NSAIDs). In other words, a healthy diet and an active and mentally stimulating lifestyle can significantly reduce the risk of developing many forms of dementia, as well as slowing down progress of the disease.

5 SLOWING DOWN DEMENTIA 9 Much of the advice is the same as in trying to prevent the onset of dementia. Helping the person to keep as physically and mentally stimulated as possible seems to help. As does maintaining a healthy and balanced diet. For Alzheimer s Disease drugs may be prescribed that can slow down the negative effects of the disease; Donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl). Research shows that the brains of people with Alzheimer's disease show a loss of nerve cells that use a chemical called acetylcholine as a chemical messenger. Loss of these nerve cells is related to the severity of symptoms experienced. These drugs help increase the levels of acetylcholine, which may temporarily improve or stabilise the symptoms. Remember, these are not cures; there is (as yet) no cure. But slowing down the rate of progression can provide a much improved quality of life. Nothing alters the fact that all dementias are awful and will have a massive impact on both the person and their loved ones, but it is still possible to live a happy and fulfilling life. It is essential for the person with dementia to retain as much control over their own life as possible and we can help them maintain a positive approach to life. IS IT STILL THE SAME PERSON? 10 People often say, It s like I m going to lose them twice. It s not really my dad/mum/husband/wife any more. Is it true? That is a really difficult question to answer. But if you think about it, the same question applies to all of us. We recently had our 40th wedding anniversary so am I the same person Christine married four decades ago? I don t actually feel much different. I am still me. But I have changed a lot over those years - and not just physically. So in many ways I am no longer the same person - and nor is Christine. We are all shaped and moulded by our experiences. The same is intrinsically true of a person on the journey through dementia, except to some extent it is in reverse. Memories can become clouded and even lost. The person will often live in some earlier part of their life. But that does not mean they are not the same person. It IS still your loved one. But whereas Christine and I have changed and developed and adjusted together, you will have to be the one adjusting because the person with dementia cannot. It is hard, it is often painful - it can be done and it can be very rewarding. You can still have a wonderful, loving, supportive relationship - but it will often be a different and changing relationship. Be prepared to accept those changes. If your wife or husband of fifty years no longer recognises you as his/her spouse, they can still love you as the person who laughs with, cries with, jokes with, encourages and supports them and helps them to make sense of a confusing and perhaps frightening world. Learn to treasure the moments your love comes together, when they recognise you.

6 11 THE DEMENTIA JOURNEY It is impossible to predict or chart an individual s progress through dementia because each one is different. In general AD tends to cause a more gradual decline, whereas VD is more likely to be in steps and plateaus as TIA s progress: Typical decline Alzheimer s Disease Typical decline Vascular Demen a People with Fronto-Temporal dementia are more likely to suffer hallucinations than others. But the reality may be very different. It is better to be open and flexible to what actually emerges rather than expecting a typical pattern. That being said, there are certain general stages through which a person often travels. When we recognise what phase the person is currently in it can help us support them. One way of showing this is to think of someone with dementia as traversing a Bridge of Life. DIFFERENT REALITIES REPETITIVE EMOTIONS The skill - Accep ng The skill - Seeing the a person s different expression of mo on as reality. emo on in people with demen a. EARLY EXPERIENCE LATE EXPERIENCE The skill - Working on the The skill - Focusing on possibility that the the sensory needs of the person can be re- person with demen a. oriented Each section of the bridge represents a different stage of the dementia and there are general patterns that we might see in this journey. The way that we view the person s needs and the skills and techniques used will vary according to where they are on the bridge. 12 EARLY STAGES At this stage the person will want to hold on to their reality and will appreciate support. Notes, reminders, lists, dates etc. can all help. Sometimes called reality orientation it can help them lead a normal life for as long as possible. DIFFERENT REALITIES The person is finding it increasingly difficult to live in the real world. Trying to force them into reality will often just cause frustration and fear. We can help by recognising and validating (accepting) their reality. REPETITIVE EMOTIONS Communication is difficult and we need to look behind the actual words and actions and see the emotions and needs behind the words and actions. LATE EXPERIENCE At these late stages we can help a lot by providing as much sensory stimulation as possible. Giving comfort, support and care and making the person feel wanted and loved will help enhance quality of life. Family and friends Likes and dislikes Physical and psychological needs The Individual Person Social and leisure needs Faith and beliefs Putting the Person at the Centre of Care is the Primary aim

7 13 BRIGHT IDEAS THAT MIGHT HELP: Always try to involve the person with dementia in making decisions about everyday matters. Make time to listen to the person. Show kindness and be reassuring. Respect the person at all times. CHALLENGING BEHAVIOUR 14 TRY NOT TO: Appear cross with the person. Argue with the person. Ignore the person. IN VERBAL COMMUNICATION: Speak in a calm way; notice the tone of your voice. Use short sentences with small bits of information. Give time for the person to respond or answer. Don t argue about facts or try to correct the person. IN NON-VERBAL COMMUNICATION: Move to the person s eye level. Maintain eye contact where possible. Use gestures, objects or signals as well as words; e.g. show an object that relates to what you are saying. REMEMBER REMEMBER REMEMBER REMEMBER: Those who struggle to communicate verbally are more sensitive to body language and respond differently. You are very important to the person with dementia. You make a big difference to how the person copes with the difficulties of having dementia. How you respond to the person, your positive, loving and patient attitude will make an enormous difference. What do we do when our loved one does something that is out-of-character, inappropriate or positively dangerous? The first thing is to keep calm and realise that the person is NOT being deliberately difficult; it is a consequence of the dementia. Whereas we have a whole lot of learnt behaviours and social codes that tell us when something is dangerous or not appropriate at that time or in that place, someone who has dementia begins to lose that awareness. It is as though they have lost their amber warning light. Shouting at them, telling them they are wrong or making them feel foolish is not helpful. We need to keep a sense of perspective and try to put sensible and proportionate safeguards into place that do not cause unnecessary restrictions for the person that will trigger distress and merely add to their already growing confusion. Calm understanding will be far more effective than knee-jerk reactions.

8 15 SOME DEMENTIA DO S AND DON TS DON T argue; DO agree DON T reason; DO divert DON T lecture; DO reassure DON T condescend; DO encourage or praise DON T force; DO reinforce DON T shame; DO distract DON T say you can t ; DO focus on what they can do DON T command/demand; DO ask DON T say I told you ; DO repeat DON T talk final outcomes; DO talk one step at a time Stay calm and patient Focus on a word or phrase that makes sense Respond to feelings rather than taking words literally SOME HELPFUL SENTENCES You seem anxious, worried... etc. I can never remember either! You seem to miss your... (mother, husband etc.) It can be hard to think of things. Let s do this together. I really need your help. I m feeling lonely and lost too. I could do with a friend too. You must have really enjoyed your job. You loved living in... You were telling me about... It s annoying when you forget things isn t it? I m sorry you re so angry. Isn t it frustrating when you can t think of a word? Is it something to do with...? You seem worried about SOME BANNED SENTENCES! You ve just asked me that. You don t go to work any more. Can t you think of something else to do? You ve forgotten again. You said that to me before. You can remember if you think harder. Don t you remember...? Mrs... is difficult today. She s been really... today I ve already told you. Wait a minute. You ve just had your... (breakfast/lunch/tea etc.) Stop doing that! Don t we all look nice today?

9 17 PLANNING FOR THE FUTURE This is always a difficult area. It is an emotional and painful process - so we tend to put it off. Dementias are progressive and degenerative, so it will get worse. Forward planning at an earlier stage can greatly reduce problems and heartache later on, so it is worth thinking about. ADVANCE DECISIONS: Also known as advance directives or living wills, they allow a person to specify what treatments they would not want and would not consent to before they have lost the capacity to decide for themselves. They do not come into effect unless and until the person loses capacity to make decisions. They can be changed by the person later on if they change their mind, as long as they still have the capacity to make that decision. It is another way for someone to maintain control of their own life and future. A legal framework for Advance Decisions is provided by the Mental Capacity Act 2005 and they are easy and straightforward to put into place. LASTING POWER OF ATTORNEY: The Mental Capacity Act 2005 also made provision for a person with dementia to appoint a person (or persons) with Lasting Power of Attorney. To be valid these need to be registered with the Office of Public Guardian and there is a cost, but again it can greatly ease problems if and when the person becomes incapable of making decisions about his/her financial affairs and/or care needs. Decisions made must be in the person s best interests. 18 CREATE A LIFE HISTORY: WHAT IS A LIFE HISTORY? A person s past is a vital part of their experience. Knowing about their past history helps you to support the person with dementia today. Life history is more than a series of events. It includes: Beliefs / values /religion / faith. Likes / dislikes. Important events, accomplishments and disappointments. People spouse, partner, friends, family, colleagues, pets. Favourite or significant places, objects and possessions. Talents / skills / capabilities. Hobbies and interests. Education and work life. Habits. How a person reacts to situations. HOW DOES LIFE HISTORY HELP? Knowing someone s life history can reveal a person s past routines which can be used now in their day to day care. Having information can help to explain a person s current behaviour and actions. Families, friends and other carers may have a better chance of understanding what a person may be trying to communicate. Life history may reveal a person s private language and words. Sharing a life history can give a person the chance to talk about their past and feel involved. Knowing a life history gives clues to a person s strengths, what they are still capable of doing for themselves. You will have a reminder of your loved one to treasure. YOUR KNOWLEDGE AND SHARED EXPERIENCES WITH YOUR LOVED ONE PUTS YOU IN A UNIQUE POSITION TO HELP DEVELOP THEIR LIFE HISTORY

10 19 20 FOR FURTHER THOUGHT: Websites: (here are just a few) The Alzheimer s Society has a lot of information, including some very useful factsheets. Dementia Web gives help on a range of support services, which include a 24 hour helpline. NHS Helpline link. Web MD link, includes a slide-show about various dementias Dementia Partnerships is a south of England group but they have useful information. Books: (a short selection of many now available) Feelings Matter Most A series of five books by David Sheard (Director of Dementia Care Matters) published by Alzheimer's Society. Written to help carers. Who Will I be When I Die? by Christine Bryden and also Dancing with Dementia: My Story of living Positively with Dementia by Christine Bryden. Jessica Kingsley Publishers. Both are intensely moving but positive personal accounts. Remember, Remember by Hazel McHaffie. Published by Luath Press Ltd. Edinburgh. Fiction but has some powerful insights about the challenges of dementia for everyone. Person-Centred Dementia Care: making services better by Dawn Brooker. Jessica Kingsley Publishers. Dawn worked with Professor Tom Kitwood who is often regarded as the father of person-centred dementia care. Making each day count: a guide to day to day services for people with dementia written by David Moore and David Sheard and published by the Alzheimer s Society. Much more could be said, but this is not the place for it. For more help and/or information please do feel free to talk to a member of CCH staff. We are happy to come and give talks and presentations to ecclesias and groups to raise awareness about and understanding of dementia, and how to help. Chris Furniss (admin@cch-uk.com) Christadelphian Care Homes Charity No OSCR Reg. No. SC Sherbourne Road Acocks Green Birmingham, B27 6AD