Carers of people with dementia

Becoming a carer

Most of us expect to spend part of our lives caring wholeheartedly for our children from their birth until they are able to leave home. We do not question our responsibility in this role, which we have chosen to assume. When their children are grown up couples may expect to embark on a new phase of their lives in which they concentrate more on their own needs and pleasures. For many however this may be the very moment when they find themselves increasingly needing to care for a parent or even occasionally a partner who has developed Alzheimer's disease or one of the other dementias.

Caring for a person with dementia isn't something that we choose to do but can't easily be avoided when it occurs in someone very close to you.

The nature of the commitment will vary in different circumstances. The person with dementia may be living with the carer, nearby, or at a distance. They may live in a residential home where, although professional care is provided, the family carer usually still sees himself or herself as the main carer by virtue of the continued bonds of love and relationship.

For many people whose lifetime partner develops dementia, their becoming a carer is seen as a natural continuation of their commitment to each other. It is also something which can, at least some of the time, be a source of mutual pleasure. There is an unspoken acceptance that they will do it better than anyone else could. A carer who looked after his wife at home until she died said that one reason he kept her at home had been the poor care he felt she had when she had been admitted to hospital for assessment.

He was proud to give back some of the care she had given him over the years. But there are often circumstances which make caring at home an unbearable burden and one carer whose wife had since died warned people not to be judgmental about those who could not manage so well, particularly in the case of very elderly couples.

For younger people where a parent had developed dementia the decision to become a carer was, in some ways, more complicated. Where the parent lived nearby and they had a close relationship, becoming the carer was seen as an expression of love, recognition of past sacrifices. One daughter actually left her marriage to care for her mother. But for some carers there was a problem persuading their parent that their help was actually needed (see 'Caring from a distance'). If they had not been close to their parent in recent years it seemed improbable that they would accept coming to live with them. Even where they had been close they had to weigh up the effect having an extra needy person in their household would have on the rest of their family. Carers described the effort of having to decide how to allocate their time between their parent with dementia, their job, their husband and family at home, their grown up children and even grandchildren, all with different needs.

Carers' accounts are full of moving testimonies to their dedication and devotion. People who are not carers may find it difficult to believe the extent of the commitment of a full time carer and the fact that this very commitment makes them vulnerable and needy in a way that is often ignored.

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Last reviewed July 2018.

Last updated March 2015.


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