Sweeting, Helen N.
Caring for a relative with dementia: anticipatory grief and social death.
PhD thesis, University of Glasgow.
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The study derived its data from semi-structured interviews with 100 relatives of patients with a primary diagnosis of dementia. At the time of the interview, the dementia sufferer lived with the carer in 61 cases, in their own home in 16 cases, and in long-term institutional care in 23 cases. The interviews were based on a `Carers' Questionnaire' which has evolved via preliminary unstructured exploratory interviews with carers, followed by a pilot study employing an initial draft of the questionnaire. The study demonstrated that caregiving relatives generally acknowledged dementia to be an illness which would result in continued deterioration and death in the sufferer; that is, as a terminal illness, bringing both current and future losses. The emotional and behavioural reactions which previous studies have labelled `anticipatory grief' were experienced - to varying degrees - by the caregiving relatives of dementia sufferers. While partly simply a response to the burdens of the caregiving situation, they could also be attributed in part as the response to the loss of the person of the dementia sufferer. The majority of carers believed they had experienced grief, and the underlying structure of their reactions was similar to that of conventional grief. The results of the study showed that taken as whole, there was considerable stability in the emotional and behavioural reactions of the caregiving relatives of dementia sufferers over time. Against this background, there was a sub-group of approximately one-third of the sample of carers whose shock, or disbelief, or hope was greater earlier on in the process of their relatives' dementia, and whose acceptance of the illness and the future had increased over time. There was, however, no evidence of a phasic emergence of a variety of discrete stages in the carers' reactions, nor of an end-point of resolution or acceptance. The different components of the emotional and behavioural reactions of caregiving relatives were associated with different caregiver and sufferer characteristics. Initial shock was associated with learning the diagnosis and prognosis suddenly. Current carer shock, denial or hope were associated with sufferers who were younger, were spouses or siblings, and were demanding, with carers who were older, with less time since onset of the dementia. Protest, questioning and guilt were more likely in younger carers, those who perceived dementia as a horrible/worst illness, and those reporting a poor relationship with the sufferer. Reactions of yearning or preoccupation were more likely in carers who perceived dementia as a horrible/worst illness, and who were not helped by a religious or other belief. Carer depression was associated with demanding sufferer behaviour, perceiving dementia as a horrible/worst illness, and reporting a poor relationship with the sufferer. Finally, carer acceptance was more likely when they perceived dementia as the consequence of aging or just an illness, and when they had greater general knowledge regarding dementia. Whilst not labelling it as such, some carers did perceive their dementing relative in terms which could be regarded as `socially dead'. Three factors comprised the underlying structure of social death. Factor one, `Anticipate Death', relating to thinking in a variety of ways about the sufferer's death, had occurred for between half and three-quarters of the sample. `Anticipate Death' was associated with variables suggesting that the dementia sufferer had lived too long, and that the carer was fed up (angry or depressed) with the situation. Factor Two, `Life Pointless', relating to elements of social death such as believing that the sufferer's death would be a blessing, had occurred - to varying degrees - for at least half the sample. This was the only social death factor to be associated with a carer's belief that they had experienced grief. It was also related to a lack of carer hope or bargaining behaviours (perhaps representing the acceptance of the inevitability of the sufferer's decline), with increased sufferer dependency, with the carer's perception of dementia as a horrible/worst illness, and their reporting a poor relationship with the sufferer. Social Death Factor Three, `Sufferer Unaware', relating to sufferer lack of awareness of, and response to, their environment, was endorsed by the vast majority of the caregiver sample. It was associated with increased impairment in the sufferer (perhaps representing `loss of the person'). Those carer emotional and behavioural reactions most clearly representing distress were associated with increased subjective burden. Belief that they had experienced grief was associated with a reduction in a carer's perceived coping ability. None of the social death factors was linked to carer subjective burden or coping. Finally, with regard to institutionalisation, there was no evidence that placement in long-term care triggered either the social death of dementia sufferers or anticipatory grief in their relatives. Among community carers, preference for institutional care was not directly related to any of the anticipatory grief reactions. It was, however, associated with social death factor `Life Pointless'. This suggests that if a carer perceives the continuation of their dementing relative's life as meaningless, then the removal of the physical presence of the sufferer to institutional care may be more acceptable, or even welcomed.
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