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Abstract
This study explored the opinions of people with advanced dementia, their family and professional carers, on promoting well-being during the last months of life and on good terminal care. It asked what wishes had already been expressed by or discussed with this group and examined the extent of communication between family and staff. Observations took place in hospital wards, residential and nursing homes and a hospice. Twelve patients (10 with advanced dementia) were interviewed, with one family carer and one professional carer each. Despite their advanced dementia, people in this study appeared to have, and were able to express, views on the end-of-life care. Some views may even have evolved since diagnosis, leading to a greater acceptance of death. This may suggest a general underestimation of the abilities of people with dementia to process abstract concepts and to discuss emotionally charged topics. It also highlighted a lack of communication both with patients about advanced directives and between family and staff about patients' wishes that had already been expressed.
The study has significance for the way professionals perceive and react to people with advanced dementia, their end-of-life well-being and preparations for a death which would accord with their wishes.
Notes
[1] A highly unusual specialist resource.
[2] The professional carers were all nurses, except for one, who was a care assistant.
[3] Central Office for Research Ethics Committees, now the National Research Ethics Service (NRES).
[4] For an interesting discussion of this point, see Stokes (Citation1996, p. 617).
[5] The one exception was a husband and wife patient couple. The husband was the nominated participant and his daughter agreed to be interviewed. This man was dominated by his wife who had insight into his, but not her, own dementia. While he appeared to enjoy the attention he received, his wife regarded our choice of him as highly questionable, if not ridiculous, and twice burst into the interview uninvited to make this clear. Persuading her of the appropriateness of our choice, and him that we valued his contribution, was the most testing moment in the research.
[6] All names are pseudonyms.
[7] It is common for residents in specialist dementia environments to have all their belongings locked away during the day, for reasons of expediency.
[8] See also van den Berg (Citation2006, p. 402) on choosing to die and Davie (Citation1997) on encouraging awareness of impending death.
[9] It is also important that people with dementia have the (potentially fatal) consequences of non-compliance with medication explained so that they may change their minds.
[10] See also Hallam, Hockey, and Howarth (Citation1999, p. 58) where non-demented residents play similar games.
[11] This ‘lessening of anxiety about death’ is also noted by Field (Citation2000, p. 290).
[12] All other participants with dementia, and Bernard, a hospice patient, were 75+.
[13] See endnote 5.
[14] Personal communication from an experienced hospital charge nurse.
[15] Hypnapagogia is “the transitional state through which the mind passes in coming out of sleep and the delusions experienced at those times” (Stedman as cited in Jones & Miesen, Citation1992).
[16] Harry actually used the words ‘in brackets’ here but it seemed clear that he actually meant ‘in inverted commas’.
[17] If carers found that their relative had, for example, lost a fear of death, this could provide great comfort for them.
[18] If so, they were atypical of their age-group, see Field (Citation2000, p. 277).