Professor Jane Gilliard
Almost everyone who has dementia relies on support from another. This is often a member of the family, but sometimes it can be a friend or neighbour, and occasionally the only source of support comes from health or social care services. Research suggests that two-thirds of carers are spouses. Since age is a risk factor for developing dementia, one might assume that the majority of carers are also older people. Of the remaining carers, the largest groups are daughters and daughters-in-law. Indeed, caring is predominantly a female activity. Research shows that male carers often frame caring within an occupational model, seeing it in the same way as they view employment with, for example, a right to time off, and that male carers are more successful at accessing support services.
It would be a mistake to consider that a person with dementia has only one carer, although they will often have a primary carer. Most people live within family and social networks, and both the person with dementia and their primary carer will be supported by others. Typically, this will be adult children supporting both parents in a situation where one of them has dementia. We should therefore consider the support needs of those who are known as secondary carers, as well as the significant others in the network.
There is a wealth of literature as a result of research projects that have investigated carers needs and carer burden. The key features from all of these are that ability to continue to care depends on:
The characteristics of dementia (i.e. the severity of the behavioural symptoms)
*The pre-morbid relationship where this was a good one, caring is likely to continue longer. (This finding has importance in a society which is moving rapidly towards the breakdown of the traditional family unit and second and subsequent relationships, which may not be as long or as strong)
*Ability to reframe caring in a positive way. Carers can find satisfaction (or gratification) on caring and the balance between difficulty and satisfaction is crucial. In other words, if a carer finds it difficult to care, this can be counter-balanced if they are also able to find satisfaction in caring.
What do carers need?
*Information. This needs to be provided in an accessible format and it should be provided in such a way that carers can keep referring back to it. Most carers say that they want as much information as they can have about the diagnosis and what to expect in the early stages, but they dont want to know too much about the future. They will want this information at a later date.
*Advice. Carers (and the person they care for) need advice about services and benefits to which they are entitled.
*Sharing. Many carers find it helpful to share their experiences and thoughts with others. There are a number of carer support groups throughout the Bristol area.
*Support. Caring can be difficult, and letting go even more so. Many carers find it difficult to admit that they need help and to accept respite in terms of day care or longer. Professional care staff need recognise that carers have different thresholds for their ability to care, and they should be helped to make the decision that are right for them as individuals.
Useful organisations to help carers include:
Alzheimers Society
5 Old School House
Britannia Road
Kingswood
Bristol BS15 8DB
Telephone: 0117 961 0693
Dementia Care Trust
Kingsley House
Greenbank Road
Bristol BS5 6HE
Telephone: 0117 952 5325
For professional care staff, information and advice is available from:
Dementia Voice
Blackberry Hill Hospital
Fishponds
Bristol BS16 2EW
Prof. Jane Gilliard
April 2003