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Incongruity of perspectives: people with dementia and their healthy partners

"The reasons for an incongruity with regard to marital relationship quality between individuals with dementia and their partners are mostly explained as being linked to caregiving stress and a feeling of having lost a coequal partner in the healthy spouse and denial on the side of the afflicted partner," Milena von Kutzleben and Wolfgang Schmid report (in their contribution to the new booklet "Dementia Care Research").

"However, social contacts (including love affairs) were also considered to be of essential importance for Quality of life by individuals with dementia. Furthermore, sorrow about the loss of relationships was found among the self-reports on the side of persons with dementia as well. A study examined the perceived marital relationship quality in dyads afflicted by early stage dementia. The results of that study might confirm the assumption that also individuals with dementia perceive a decline in relationship quality to a certain extent:

The obervation that persons with dementia gave lower ratings on relationship quality than the controlgroup but higher ratings than caregivers suggests that there may have been some adjustment of perceptions on the part of the partners with dementia but to a lesser extent than it was the case for caregivers ...

Another aspect that has to be taken into account is the fact that persons with dementia sometimes set their priorities differently than relatives or professional caregivers do when acting as proxy answerers. One example is the fact that persons with dementia are able to reflect on their financial situation and that financial security is an aspect that contributes to subjective quality of life, but which is missing in the awareness of informal as well as formal carers ..."

Dementia Care Research
Scientific Evidence, Current Issues and Future Perspectives
Jochen René Thyrian & Wolfgang Hoffmann (Eds.)