Living with dementia
This page has been prepared for relatives of people with a dementia by B&M Care. Its purpose is to provide information that will, it is hoped, lead to an understanding of dementia. B&M Care is indebted to the Alzheimer's Disease Society, Counsel and Care and such authors as Mary Marshall and Graham Stokes, whose work has been drawn upon in preparation of this page.
Living with dementia
The best estimate is that there are 850,000 people with a dementia in the United Kingdom. Put it another way, one in every ten people over the age of seventy five will have a dementia and over 20,000 people under 65 . This means that there are many carers and relatives in your area who are in a similar situation to yourself.
Further help and advice on Dementia
The best source of information of dementia can be found at The Alzheimer's Disease Society, Gordon House, 10 Greencoat Place, London SW1P 1PH. The Helpline phone number is 0845 300 0336, or why not email them. The Society will be able to provide you with information about dementia, local services and relative support groups.
What is Dementia?
Dementia is a general term used to cover a number of diseases. The vast majority of people who develop these diseases are elderly but it may start for some people in their middle years. There are two main types of dementia. Alzheimer's Disease accounts for 60% of all cases. Multi-Infarct Dementia, which accounts for 20% of cases and is caused by a series of small strokes to the brain. Each series of strokes causes a sudden deterioration. The progress of Alzheimer's is more gradual. Other types of dementia are Pick's Dementia, Huntington's Disease, Crutz-feldt-Jacob Disease and Parkinson's Disease.
What do these diseases do?
The condition is a degeneration of the brain cells which leads to the destruction of all mental and physical functions. It may take from five to twenty years to develop. Dementia as an illness is different from normal ageing. It is a terminal illness which, over time, leads to changes in the person. Dementia gradually affects the ability of the person to:
• Remember things for more than a few seconds
• Make sense of the world around them
• Cope with the tasks of daily living
• Express their feelings
• Take initiatives or plan
• Think clearly and solve problems
• Cope with an over-stimulating environment
• Behave in the normal ways they have learned during their lives
Causes of Dementia
The causes are unknown. A family history may be a factor but just because your mother or father has had the disease does not mean that you will develop it. In the case of Huntingdon's Disease however there is a hereditary link.
Carers feeling guilty
Your feelings are quite common amongst carers of people with a dementia. However you should consider that you are not the cause of the disease and that caring for them will become a full time job if it has not already done so. This can become stressful and your own health and family life may suffer which won't help your relative either. The staff in a home go off duty for a rest and come back fresh to the task whilst you as the carer in your own home don't have 'off duty' periods.
Being involved at the care home
It is important that you do stay involved when your relative moves into a dementia care home. The staff need to know as much as possible about your relative, their likes, dislikes, routines and interests, so that they can design a care plan with you. A care plan is a set of instructions to the staff which tells them how the individual concerned would wish to live their life and how they will be supported to do so by the staff and yourself if you so wish. The Alzheimer's Society sends this message...
"Memories are the foundation stones of our personalities. As the onset of dementia begins to cloud the memory it is vital that relatives share the person's memories with the staff so that together they can stimulate and maintain the memory functions for as long as possible. This will help to preserve the quality of life for their loved one. We believe that a partnership between relatives and staff is central to good care practice".
People with a dementia need to have familiar things around the. So you can help to create the right environment by discussing with the staff which possessions you could bring into the home to personalise your relative's room. Your relative may have difficulty in recognising their own bedroom. It would be helpful if you could bring a familiar photograph or print etc. to go on the outside of their door for their easier identification.
A photograph album containing photos of the family, friends and place known to your relative would also be helpful. It is people's short term memory that goes first and photos provide a good talking point. The staff need to be able to focus on the ability not the disability.
This isn't the person I knew and loved
As a family member you may experience a wealth of over-whelming emotions and you should always remember your loved one how they were. With your help the staff can give your relative the best quality of life that it is possible for them to enjoy. Your knowledge and love and the staff's expertise and experience will make a great team.
Good communciation skills to use with people with dementia related needs
Use the person's prefered name (always start from a place of respect; go with what the person wants or appreciates)
Make a good first impression (identify who you are; smile; approach person from the front; handshake if appropriate; cheerful and relaxed approach)
Keep language simple (avoid giving too many instructions at once; keep sentences short; add some descriptive details one thing at a time "give me the purse" "that brown purse" "that nice brown purse on the chair"; use gesture, show the person what you mean).
Ask questions wisely (remember memory impairment can make answering questions frightening, embarrassing and frustrating; worse, people know that they should know and this can heighten those feelings; when questions are asked, make sure that they are broad enough not to require specific facts or detail; workers should fill in with cues and information - for example, you could ask if a person liked this dinner here or this chicken on the plate, show the chicken.
The secret of Good Timing (some people will have good or better times of the day when it is best to ask people to do something. Try to listen to the refusal and respect it. If it is essential - sometimes just bringing up the matter later will work well).
Be conscious of non verbal communication (as language fails a person, they will look for non-verbal clues. The person can get a message from the care workers' tone, volume of voice, posture, hand gestures).
Do not argue with or confront the person (a person may well feel convinced that they are right and arguing will antagonise a confrontation and a further argument (and create ill being and ill feeling); having the ability to let go of the 'right' answer can help to develop the knack.
Remember that behaviours communicate a message (people with dementia can often communicate how they feel with words; at other times people communicate by behaviours. You should not assume that behaviour is 'just the dementia' or 'meaningless'. Wandering about can be a sign of boredom; looking for the toilet. Tears could suggest lonliness. Laughter and humming may mean the person is happy. Responding to these clues may help the person to feel valued, important and most importantly, that what they are feeling is important and has a meaning).
Treat the person as an adult (making use of simple sentences and straight forward language does not mean treating the adult person with dementia as if they were a child; baby talk should not be used; the Royal We - we've been a tired boy today haven't we; shall we take off those dirty pants? Should be avoided as they are demeaning and treat people as if they are children. A task that may appear meaningless can be perfectly meaningful when put into an adult context. An example could be: a resident appeared to spend a lot of the day waving his ams about and putting things down and picking them up - it was helpful to know that in his working life, he had been a chef on the hospital assessment unit, he had returned to his cooking days and was cooking for all the people on the ward).
Use life story often - make reference to the persons biography, who they are as often as you can. Some people do this for example, even in greeting, give compliments, reminiscence, provide appropriate distractions, introduce the person to others and not what subjects should be avoided. Using past successes and present abilities helps communications and helps a person feel good about themselves.
Respond to the persons emotional needs (people need to be able to share their feelings with you and know that you will respond to them and be concerned about them).
Speak using positive language (rather than don't go that way, say let's go this way?; How do you like being told no?) People with dementia are not different!!
Use humour (sharing a joke or a funny moment creates warmth, happiness, laughter and a positive environment; people with dementia may focus very quickly on emotional 'mood', so trying to create a happy atmosphere can often be picked up by people with dementia who will feel positive too.