People who are looking after a family member with dementia usually find that they need support from others, even if they have a good care package from social services (See Assessments and care plans). Children, siblings and other members of the family were often willing to be called to help at crisis points, or when difficult decisions had to be made. We were also told of many examples of friends and neighbours whose kindness had made it possible for the person to continue to live in their home.
Friends who were willing to pay regular visits (sometimes as part of a rota organised by the main carer) were often highly valued because they helped maintain social life for the person with dementia. Some carers said that this was even more important to them than the washing, dressing and basic care available from social service.
When it came to practical and emotional support many carers said that the most useful advice they had received was from other carers. A husband explained that although he found the information from the Alzheimer’s Society interesting he often only saw it after he’d had to deal with the problem, whereas other carers were a rich source of advice.
Explains that he felt that the people from the Alzheimer’s Society were helpful because they understood more about dementia, and were more friendly, than the psychiatric nurses.
Explains that he has picked up most practical information from other carers.
Many of the people we talked with had joined a local carers’ support group, though they had sometimes not found out about the groups for many months. The advice and support was often described as invaluable. Many carers said that they would advise others to join the Alzheimer’s Society and find out about local support groups as soon as possible rather than wait until they reached a crisis point. Several could not understand why details about support groups were not part of a standard package of information for all carers.
People who were working sometimes found that they could not attend support group meetings because they tended to be held during the day.
Suggests that other carers should get in touch with their local support groups.
Thinks the advice and support from good friends and the Alzheimer’s Society have been invaluable.
Practical advice from support groups included advice about benefits, how to choose residential care and advice about how to manage behaviour. Other carers had often been through similar experiences and were able to understand and offer their own perspectives. Some carers described meeting others for lunch and appreciating the social contact and opportunity to enjoy themselves. Some local groups run drop in centres where carers could leave the relative for a couple of hours so that they could deal with household issues, go shopping or attend their own medical appointments.
Alzheimer’s Society gave advice about how to inspect residential care homes.
Explains the value of the practical information and support from other carers in the Alzheimer’s society.
Some of those who said they had gained a lot from support groups commented that they did not see themselves as the sort of people who joined groups. One who had considered himself and his wife to be very self-sufficient said that he regretted not joining his group earlier.
Did not at first want to ask for help, but finds that other carers can understand each others problems.
Has found the Alzheimer’s Society a great support, although he and his wife are usually fairly insular people.
Regrets not having joined the Alzheimer’s Society earlier.
People who had religious beliefs explained how their beliefs were comforting and helped them to cope with their role as a carer. Religion could also mean being part of a community that could be called upon to offer support.
A woman whose mother had always been a regular church-goer explained that even if her mother did not understand the significance of taking communion, a visit from the vicar had a social function and would be welcome.