Becoming a carer for a person with dementia

Families come in all shapes, sizes and forms. People and loved ones may be part of scattered, blended or chosen relationships. For many of the people we spoke to, they took on the role of a carer to support a loved one living with dementia, whether it may be a parent, grandparent or partner. For others, the role of carer was a conscious decision and came in many other forms: friends/neighbours, work acquaintances, extended/distant relatives, in-laws, etc. The reasons why people consciously decided to support someone living with dementia was due to reasons such as: strained relationships in the person’s own family, the person being single with no other living next of kin, or family members living overseas. In many of these situations, the person supporting the person living with dementia advocated on the person’s behalf, in order to help them access the support they needed.

For some people the role of a carer is not a chosen one and at times, the person comes into the care role without realising it.

Felt that the role of carer crept up on her without her making any conscious decision to do it.

Age at interview 62

Gender Female

Age at diagnosis 61

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The nature of the commitment will vary in different circumstances. The person with dementia may be living with the person supporting them,, nearby, or at a distance. The person living with dementia may have home care support with care agencies involved, or they may live in residential care with full-time care.

Jenny talks about her mother’s care and how each person should be able to choose how much involvement they have in supporting the person living with dementia.

Jenny describes decisions around choosing to care for her mother

Jazz talks about how she decided to care for her former member of staff, but had not considered herself a carer until she felt the impact when the person with dementia had periods of intensive care.

Jazz decided to support her former staff member who was living with dementia

One person 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.

Could not dream of doing anything other than care for his wife just as she would have cared for him.

Gender Male

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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.

Describes why he felt he was the best person to care for the wife hed loved all his life.

Gender Male

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For younger people where a parent or partner 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 giving back to the person who loved and raised them. One person 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’).

For some people, the effect of having a working age person living with dementia strained relationships in the family, particularly for young children growing up with a parent’s out of character behaviour. They were more determined to support them as best they could in a challenging situation. Carers described the effort of having to decide how to allocate their time between their partner, parent or grandparent with dementia, their job, their young family at home or grown up children or grandchildren.

For young carers 18 years old and under, they acknowledged the challenges around continuing education, receiving support and giving themselves the space for self-growth.

Kiran describes how she supported her grandmother who was living with dementia, from the age of 10. She was trying to balance her own caring responsibilities for her grandmother while attending school and University.

Kiran describes her role caring for her grandmother as a child

Ellie talks about how she juggled university and her mother’s ongoing care. She chose to care for her mother and put her own career on hold to flexibly coordinate and manage her mother’s home care.

Ellie recalls her decision to halt her career to continue supporting her mother

Carers’ accounts are full of moving testimonies to their dedication to support the person living with dementia. 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 their need for respite can be overlooked.

Describes why it is important that the carer remembers his own needs as others may not be aware of them.

Age at interview 57

Gender Male

Age at diagnosis 56

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Last reviewed November 2023
Last updated January 2024