Helpdesk

Living with Dementia | Choosing a care home

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, who work has been drawn upon in preparation of this page.

"I feel alone, but am I actually alone?"

The best estimate is that there are 650,000 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. This means that there are many relatives in your area who are in a similar situation to yourself.

"How can I find information or other people in my position when there are not signposts?"

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. Hours are 0800 - 1800, Monday to Friday. The Society will be able to provide you with information about dementia, local services and relative support groups.

"But 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, 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
Behaving in the normal ways they have learned during their lives

The person may also develop a tendency to wander and become irritable. All these changes are directly due to the damage of the nerve cells and the messages they pass which happens in all the different illness' that cause dementia, including the most comment, Alzheimer's Disease.

"Are the causes of dementia known?"

The causes are known. 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.

"I feel guilty about putting my relative in a home"

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 form 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.

"If my relative is in a home - I'm not involved"

It is important that you do stay involved. 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. Brian Roycroft, Director of the Alzheimer's Disease 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. I 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 saff 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"

Sadly this is true but you should remember 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.