Dementia one-stop guide: Managing care at home

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Most people with dementia live at home and half of those who live in their own home live alone. It is perfectly possible for a person with dementia to be happy at home for a long time and to do very well, right to the end of life. However, some people reach a stage where they need to be looked after more intensively.

Can you stay at home for ever?

Dementia is a long-term condition that gradually worsens, but many people with dementia become ill and die of something else before the symptoms get too serious, so it’s important to plan for living well and not feel that everything has suddenly shuddered to a halt the day the diagnosis is given. This chapter gives some help in understanding how to make care at home work.

My dad started to lose some of his words and reached the point where he could not spell his own name. But we travelled and walked and worked in the garden right up till the day he had his heart attack and died. (Daughter of 67-year-old man with early-onset dementia).

In general people want to put off as long as possible the time when they might have to give up their own home to go to other accommodation. Good care homes and nursing homes are in despair because of bad publicity about a small number of really unsatisfactory care homes. The good ones provide charming and comfortable places for people to live in at a difficult time of life; but calamitous stories dominate the press and public imagination. That shapes the perception of families and friends when they are considering moving someone into a care home.

Many people at the early stages of dementia are quite clear that they want to stay at home for ever. We all love our homes. You spend your whole life getting it just the way you want it, so why would you leave it and go somewhere else, particularly when you’re not feeling right?

How to stay at home for as long as possible

In this chapter there are ideas about how to stay at home for as long as possible. But there is a postscript reminding you that if you do move to a care home or nursing home it is not a sign of failure or betrayal. A day may come when you think it is right for such a move. You can be kind to your family by telling them that when the day comes, even if you are not well enough to take part in the decision, you accept that this is what they may have to do for you.

You need to trust someone else to do what is best for you and that is why choosing the right person to have power of attorney is so important.