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Family members’ experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence

Published online by Cambridge University Press:  07 June 2017

Kirrily Rogers ,
Honor Coleman ,
Amy Brodtmann ,
David Darby  and
Vicki Anderson
Kirrily Rogers*
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia
Honor Coleman
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia
Amy Brodtmann
Affiliation:
Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia The Florey Institute of Neuroscience and Mental Health, 30 Royal Parade, Parkville, 3052, Victoria, Australia
David Darby
Affiliation:
Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia The Florey Institute of Neuroscience and Mental Health, 30 Royal Parade, Parkville, 3052, Victoria, Australia
Vicki Anderson
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia Clinical Sciences Research, Murdoch Childrens Research Institute, 50 Flemington Road, Parkville, 3052, Victoria, Australia
*
Correspondence should be addressed to: Kirrily Rogers, Eastern Cognitive Disorders Clinic, c/- Neuro Diagnostic Unit, Building B, Ground Floor, Box Hill Hospital, Nelson Road, Box Hill, VIC 3128. Australia. Phone: +61 3 9895 4639; Fax: +61 3 9895 4610. Email: [email protected].
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Abstract

Background:

Most research on family members’ experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members’ experiences of the pre-diagnostic phase of dementia to inform clinical practice.

Methods:

We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search.

Results:

An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members’ experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others.

Conclusions:

Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.

Keywords

dementiafamilycaregiversdiagnosisqualitative research
Type
Review Article
Information
International Psychogeriatrics , Volume 29 , Issue 9 , September 2017 , pp. 1425 - 1437
Copyright
Copyright © International Psychogeriatric Association 2017 

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References

Allen, J., Oyebode, J. R. and Allen, J. (2009). Having a father with young onset dementia: the impact on well-being of young people. Dementia, 8, 455–480.CrossRefGoogle Scholar
Bakker, C., de Vugt, M. E., Vernooij-Dassen, M., van Vliet, D., Verhey, F. R. and Koopmans, R. T. (2010). Needs in early onset dementia: a qualitative case from the NeedYD study. American Journal of Alzheimers Disease & Other Dementias, 25, 634–640.Google Scholar
Barbour, R. S. (2001). Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ, 322, 1115–1117.Google Scholar
Boise, L., Morgan, D. L., Kaye, J. and Camicioli, R. (1999). Delays in the diagnosis of dementia: perspectives of family caregivers. American Journal of Alzheimer's Disease, 14, 20–26.Google Scholar
Brodaty, H., Woodward, M., Boundy, K., Ames, D., Balshaw, R. and Group, P. S. (2014). Prevalence and predictors of burden in caregivers of people with dementia. American Journal of Geriatric Psychiatry, 22, 756–765.Google Scholar
Bunn, F. et al. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Medicine, 9, e1001331.CrossRefGoogle ScholarPubMed
Burns, A. and Iliffe, S. (2009). Alzheimer's disease. British Medical Journal, 338, 467–471.CrossRefGoogle ScholarPubMed
Chrisp, T. A. C., Tabberer, S. and Thomas, B. D. (2012). Bounded autonomy in deciding to seek medical help: carer role, the sick role, and the case of dementia. Journal of Health Psychology, 18, 272–281.Google Scholar
Chrisp, T. A. C., Thomas, B. D., Goddard, W. A. and Owens, A. (2011). Dementia timeline: journeys, delays and decisions on the pathway to an early diagnosis. Dementia, 10, 555–570.CrossRefGoogle Scholar
Clare, L. et al. (2012). The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: testing a biopsychosocial model. International Journal of Geriatric Psychiatry, 27, 167–177.CrossRefGoogle ScholarPubMed
Cooke, A., Smith, D. and Booth, A. (2012). Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22, 1435–1443.Google Scholar
Dixon-Woods, M. et al. (2007). Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. Journal of Health Services Research & Policy, 12, 42–47.CrossRefGoogle ScholarPubMed
Eustace, A. et al. (2007). Behavioural disturbance triggers recognition of dementia by family informants. International Journal of Geriatric Psychiatry, 22, 574–579.Google Scholar
Harris, P. B. (2010). Dementia and dementia care: the contributions of a psychosocial perspective. Sociology Compass, 4, 249–262.Google Scholar
Hayes, J., Zimmerman, M. K. and Boylstein, C. (2010). Responding to symptoms of Alzheimer's disease: husbands, wives, and the gendered dynamics of recognition and disclosure. Qualitative Health Research, 20, 1101–1115.Google Scholar
Kitwood, T. and Bredin, K. (1992). Towards a theory of dementia care: personhood and well-being. Ageing and Society, 12, 269–287.CrossRefGoogle ScholarPubMed
Klink, K. A. (2013). Exploration of Spousal Caregiver Experiences of Those with Young Onset alzheimer's Disease: The Diagnostic Journey. Ann Arbor, MI: ProQuest Dissertations and Theses: Rush University.Google Scholar
Krull, A. C. (2005). First signs and normalizations: caregiver routes to the diagnosis of Alzheimer's disease. Journal of Aging Studies, 19, 407–417.CrossRefGoogle Scholar
Lyman, K. A. (1989). Bringing the social back in: a critique of the biomedicalization of dementia. The Gerontologist, 29, 597–605.Google Scholar
Mays, N. and Pope, C. (1995). Rigour and qualitative research. BMJ, 311, 109–112.Google Scholar
McKhann, G. M. et al. (2011). The diagnosis of dementia due to Alzheimer's disease: recommendations from the national institute on aging-Alzheimer's association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer's & Dementia, 7, 263–269.Google Scholar
Meyer, J. J., McCullough, J. and Berggren, I. (2016). A phenomenological study of living with a partner affected with dementia. British Journal of Community Nursing, 21, 24–30.Google Scholar
Mukadam, N., Cooper, C., Basit, B. and Livingston, G. (2011). Why do ethnic elders present later to UK dementia services? A qualitative study. International Psychogeriatric, 23, 1070–1077.CrossRefGoogle Scholar
Noyes, J., Popay, J., Pearson, A., Hannes, K. and Booth, A. (2011). Chapter 20: qualitative research and cochrane reviews. In Higgins, J. P. T. and Green, S. (eds.), Cochrane Handbook for Systematic Reviews of Interventions, Version 5.1.0. The Cochrane Collaboration. Available at: www.cochrane-handbook.org; last accessed 11 May, 2015.Google Scholar
Paton, J., Johnston, K., Katona, C. and Livingston, G. (2004). What causes problems in Alzheimer's disease: attributions by caregivers. A qualitative study. International Journal of Geriatric Psychiatry, 19, 527–532.Google Scholar
Pesonen, H. M., Remes, A. M. and Isola, A. (2013). Diagnosis of dementia as a turning point among finnish families: a qualitative study. Nursing & Health Sciences, 15, 489–496.Google Scholar
QSR (2012). NVivo Qualitative Data Analysis Software. Melbourne: QSR International Pty Ltd.Google Scholar
Quinn, C., Jones, I. R. and Clare, L. (2016). Illness representations in caregivers of people with dementia. Aging and Mental Health, 21, 1–9.Google ScholarPubMed
Robinson, L., Clare, L. and Evans, K. (2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging and Mental Health, 9, 337–347.Google Scholar
Sandelowski, M. (2012). Metasynthesis of qualitative research. In Cooper, H. (ed.), APA Handbook of Research Methods in Psychology: Volume 2. Research Designs (pp. 19–36). Washington DC, USA: American Psychological Association.Google Scholar
Sandelowski, M. (2015). A matter of taste: evaluating the quality of qualitative research. Nursing Inquiry, 22, 86–94.CrossRefGoogle ScholarPubMed
Schoenmakers, B., Buntinx, F. and Delepeleire, J. (2010). Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review. Maturitas, 66, 191–200.Google Scholar
Speechly, C. M., Bridges-Webb, C. and Passmore, E. (2008). The pathway to dementia diagnosis. Medical Journal of Australia, 189, 487–489.Google Scholar
Teel, C. S. and Carson, P. (2003). Family experiences in the journey through dementia diagnosis and care. Journal of Family Nursing, 9, 38–58.Google Scholar
Thomas, J. and Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45.CrossRefGoogle ScholarPubMed
Valimaki, T., Vehvilainen-Julkunen, K., Pietila, A. M. and Koivisto, A. (2012). Life orientation in finnish family caregivers' of persons with Alzheimer's disease: a diary study. Nursing & Health Sciences, 14, 480–487.Google Scholar
van Vliet, D. et al. (2011). Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404.CrossRefGoogle ScholarPubMed
Walsh, D. and Downe, S. (2006). Appraising the quality of qualitative research. Midwifery, 22, 108–119.CrossRefGoogle ScholarPubMed
WHO (2012). Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organisation. Available at: http://www.who.int/mental_health/publications/dementia_report_2012/en/; last accessed 11 May 2015.Google Scholar
Wilson, H. S. (1989). Family caregivers: the experience of Alzheimer's disease. Applied Nursing Research, 2, 40–45.CrossRefGoogle ScholarPubMed
Zucchella, C., Bartolo, M., Pasotti, C., Chiapella, L. and Sinforiani, E. (2012). Caregiver burden and coping in early-stage Alzheimer disease. Alzheimer's Disease and Associated Disorders, 26, 55–60.Google Scholar
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