Living with dementia
This page has been prepared for relatives of people who live 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.
New Dementia Test from BBC News
Memory and language tests can reliably reveal "hidden early dementia", say UK experts. Most dementias are missed for years as the symptoms can be elusive until considerable brain tissue is lost. But doctors from Oxford found they were able to spot very early warning signs when they looked closely enough. The findings in Neurology could help doctors diagnose dementia sooner, which is crucial since treatment is most effective when given early. Over a span of 20 years, the researchers studied a group of 241 healthy elderly volunteers, giving them regular tests designed to measure their thinking or cognitive powers. When they scrutinised the test results, the doctors found subtle clues that, in retrospect, hinted at impairment.
Specifically, the patients who went on to develop mild cognitive impairment or pre-dementia stumbled on tasks involving language expression, learning and recall. For example, they had greater difficulty remembering the name for common objects or animals and explaining the meaning of a given word. And those who were older and who scored lower on the language or memory tests tended to deteriorate more quickly.
Professor David Smith and his team say their findings fit with what we already know about dementia. Experts have noted that the early stages of dementia are associated with linguistic problems, such as word-finding difficulties. Early literary works by authors who have later been diagnosed with Alzheimer's show similar changes in language use - simpler narratives and a smaller vocabulary.
Further help and advice on Dementia
The best source of information on dementia can be found at The Alzheimer's Society, Devon House, 58 St Katharines Way, London E1W 1LB. The helpline phone number is 0300 222 1122. 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 conditions. The vast majority of people who develop these 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 sudden deterioration. The progress of Alzheimer's is more gradual. Other types of dementia are Pick's Dementia, Huntington's Disease, Creutzfeldt-Jacob Disease and Parkinson's Disease.
What do these diseases do?
The condition is 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 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 which won't help your relative either. The staff in the home go off duty for a rest and come back fresh to the task whilst you as a 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 the person in their care, 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 dementia need to have familiar things around them. So you can help create the right environment by discussing with the staff which possessions you could bring into the home to personalise your 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 places 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 communication skills to use with people with dementia related needs
- Use the person's preferred name.
- Make a good first impression and identify who you are; smile; approach the person from the front; handshake if appropriate; cheerful and relaxed approach.
- Keep language simple and use gesture, show the person what you mean.
- Ask questions wisely, making sure that they are broad enough not to require specific facts or detail.
- 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. Sometimes just bringing up the matter later will work well.
- Be conscious of non verbal communication - the person can get a message from tone, volume of voice, posture and hand gestures.
- Do not argue with or confront the person, have the ability to let go of the 'right' answer.Remember that behaviours communicate a message. You should not assume that behaviour is 'just dementia' or 'meaningless'. Walking can be a sign of boredom; looking for the toilet. Tears could suggest loneliness. Laughter and humming may mean the person is happy.
- Treat the person as an adult. A task that may appear meaningless can be perfectly meaningful when put into an adult context.
- Use life story often - make reference to the persons biography, who they are as often as you can. Using past successes and present abilities helps communications and helps a person feel good about themselves.
- Respond to the person's 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.
- Use humour - sharing a joke or a funny moment creates warmth, happiness, laughter and a positive environment; try to create a happy atmosphere that can be picked up by people living with dementia who will feel positive too.