The vast majority of care for people with dementia takes place in the community. It is estimated that as many as 80% of people with dementia are living in their own home or the home of a close relative and only 20% are cared for in nursing or residential care settings. By definition, those living with a person with dementia become the primary caregiver/s and these are most often wife or daughter carers. Caring relatives provide an extremely valuable service and as the responsibility of care giving usually falls upon one person's shoulders, most carers experience some form of personal, emotional and financial hardship. Yet the strain that carers are under and their invaluable contribution to care may not be fully acknowledged. Most carers cope with little or no support from statutory services and the burden of care giving gradually builds up as their relative's condition progressively worsens over time. Carers realise that no matter how competent or committed they are, caring is likely to become increasingly more difficult. They worry for the future and how they will cope.
Some carers do not recognise themselves as being a 'carer'; their caring role and their relative's illness having developed so gradually and insidiously. Many have not been identified by services that could provide them with practical help and support and some have received no specialist diagnosis for the illness from which their relative is suffering or a formal assessment of their needs. For these reasons dementia has been referred to as an 'iceberg condition', that is to say only the most severely affected families are known to services. The phrase 'The Silent Epidemic' has been coined to describe the hidden extent of the illness in our society (estimated to affect 750,000 people in the United Kingdom) and its devastating impact on people with dementia and their carers.
A great deal of support is needed to keep a person with dementia at home in the community. Many carers suffer from severe stress and strain as a result of caring 24 hours a day, 7 days a week over many months or even years. This endless caring has been referred to by carers themselves as 'The 36 Hour Day'; there never being enough hours in the day to do all the work that needs to be done and a feeling that one day melts into another. Many carers have to cope with problems which arise during the night, such as wandering, incontinence or severe insomnia, as well as having to provide constant care and supervision throughout the day. The physical and psychological health of carers may be adversely affected by such endurance, for example, a back injury may be sustained by lifting a heavy dependant into the bath, severe insomnia or gastric complaints may develop and depressive symptoms may result.
Carers have to make many psychological adjustments throughout their years of care giving, such as initially having to come to terms with the diagnosis and prognosis of the person’s illness and what the future holds for them as individuals. They also have to come to terms with the constant adaptations which they have to make as new problems and situations arise, as well as the losses which are incurred as the condition gradually worsens, for example, when a husband or wife fails to recognise them for the first time or develops a continence problem.
Some carers continue to receive the support of family and friends, but for others caring can be an extremely socially isolating experience. Friends and relatives may stop calling due to embarrassment at the behaviour of the person with dementia, or carers might ask friends not to call or socially isolate themselves because they feel their situation too distressing to share with others. Some carers might simply become so restricted in their own home that it becomes impossible for them to continue with outside interests or social contacts. For others leaving their relative safely alone in the home is no longer an option, as they would be at risk of falling, wandering outside or even leaving gas cookers on unlit.
However, caring for someone with dementia can also be a very rewarding experience. For most carers the wish to care grows out of close ties of marriage and blood, as well as out of long established patterns of life reinforced by bonds of love and affection, or alternatively, out of a sense of duty or obligation. As the illness of the cared for person has persisted for many years rather than months, so the carer's skills in care-giving gradually develop and they make considerable changes in their lives. Despite the tremendous emotional, psychological, physical and social weight of caring, most carers derive a great deal of satisfaction from their role and express a wish to continue caring for their relative at home for as long as possible and up to their death. However, they cannot be expected to do so without appropriate forms of practical, social, emotional and psychological support. Indeed, without it the care-giving situation can break down and a crisis admission to permanent care result, with negative consequences for both the person with dementia and their carer.