Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences

被引:0
作者
Hevink, Maud [1 ]
Linden, Iris [1 ]
de Vugt, Marjolein [1 ]
Brodaty, Henry [2 ]
Low, Lee-Fay [3 ]
Phillipson, Lyn [4 ]
Jeon, Yun-Hee [5 ]
Gresham, Meredith [2 ]
Doucet, Shelly [6 ]
Luke, Alison [6 ]
Vedel, Isabelle [7 ]
McAiney, Carrie [8 ,9 ]
Szczesniak, Dorota [10 ]
Blaszkiewicz, Maria [10 ]
Rymaszewska, Joanna [10 ]
Verhey, Frans [1 ]
Wolfs, Claire [1 ]
机构
[1] Maastricht Univ, Alzheimer Ctr Limburg, Sch Mental Hlth & Neurosci MHeNs, Dept Psychiat & Neuropsychol, Maastricht, Netherlands
[2] Univ New South Wales, Ctr Hlth Brain Ageing, Discipline Psychiat & Mental Hlth, Sydney, NSW, Australia
[3] Univ Sydney, Fac Med & Hlth, Sydney, NSW, Australia
[4] Univ Wollongong, Fac Arts Social Sci & Humanities, Sch Hlth & Soc, Wollongong, NSW, Australia
[5] Univ Sydney, Fac Med & Hlth, Susan Wakil Sch Nursing & Midwifery, Sydney, NSW, Australia
[6] Univ New Brunswick, Ctr Res Integrated Care, Dept Nursing & Hlth Sci, St John, NB, Canada
[7] McGill Univ, Jewish Gen Hosp, Lady Davis Inst, Dept Family Med, Montreal, PQ, Canada
[8] Univ Waterloo, Sch Publ Hlth Sci, Waterloo, ON, Canada
[9] Schlegel UW Res Inst Aging, Waterloo, ON, Canada
[10] Wroclaw Med Univ, Dept Psychiat, Wroclaw, Poland
基金
英国医学研究理事会; 加拿大健康研究院;
关键词
Dementia; caregiver; support; qualitative; cross-country; FAMILY CAREGIVERS EXPERIENCES; INFORMAL CAREGIVERS; NURSING-RESEARCH; CARE; PEOPLE; SUPPORT; PERSPECTIVES; ATTITUDES; SERVICES; DEMAND;
D O I
10.1080/13607863.2024.2342968
中图分类号
R592 [老年病学]; C [社会科学总论];
学科分类号
03 ; 0303 ; 100203 ;
摘要
ObjectivesThis explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland.MethodQualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers.ResultsTwenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences.ConclusionAcross countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.
引用
收藏
页码:1447 / 1456
页数:10
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