‘I wish they would remember that I forget:’ The effects of memory loss on the lives of individuals with mild-to-moderate dementia

Abstract

Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.

A qualitative study on caregivers and patients perceptions about Alzheimer’s and related dementias in southwestern Uganda

“…Some people including family members perceived them as witches and others think they might be something wrong they did in order to get such illness and in turn these patients continue to have the psychological torture thinking about how the family and the community at large perceive them. It is not surprising that the above instances were also discovered by (7,9,26)…”

“…Patients with dementia who report of less effective coping strategies have no intervention that can help them continue with life and the caregivers forget that they need help whenever necessary. (9) . The burden of care for patients with dementia is high for both formal and informal caregivers.…”

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

“…Social exclusion was described across several studies. In two studies, people living with dementia perceived that they were ignored by other people (Katsuno, 2005;Mok et al, 2007), whilst in other studies, they reported that friends and family had reduced or ended contact with them since they had been living with dementia (Clemerson et al, 2014;Harris, 2004;Harris, 2013;Hedman et al, 2012;Katsuno, 2005;Langdon et al, 2007;Mok et al, 2007;O'Sullivan et al, 2014;Powers et al, 2016); "she never came to the house or anything. Ah well, excuses ...…”

“…Taken from the theme: The impact of patronizing attitudes (O'Sullivan et al, 2014, pp.489) A further aspect was that several studies found people with dementia perceived that their views were no longer sought or listened to. Others no longer asked them for advice, did not consult them in decision-making (Beard and Fox, 2008;Powers et al, 2016), or distrusted what they said (Beard and Fox, 2008;Mok et al, 2007). Some were left feeling that others did not care what they thought (Orulv, 2012, Powers et al, 2016 or no longer even perceived them to have feelings and needs (Clare et al, 2008); "The things that I say seem to be a lot more subject to question than they used to be.…”

“…One study found that others' responses made people fearful of dementia itself (Katsuno, 2005). Feelings of pain and sadness were described (Beard and Fox, 2008;Harris and Sterrin, 1999;Harris, 2004;Katsuno, 2005;Mok et al, 2007), in addition to loneliness in response to social exclusion (Clare et al, 2008;Powers et al, 2016); "When I was first diagnosed…they all said 'Oh, what can I do?' I just asked them to remain being my friend; I don't know why they left.…”