Skip to main content Accessibility help

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

  • Kirrily Rogers (a1) (a2), Honor Coleman (a1), Amy Brodtmann (a2) (a3), David Darby (a2) (a3) and Vicki Anderson (a1) (a4)...



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.


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


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.


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.


Corresponding author

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:


Hide All
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, 455480.
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, 634640.
Barbour, R. S. (2001). Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ, 322, 11151117.
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, 2026.
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, 756765.
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.
Burns, A. and Iliffe, S. (2009). Alzheimer's disease. British Medical Journal, 338, 467471.
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, 272281.
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, 555570.
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, 167177.
Cooke, A., Smith, D. and Booth, A. (2012). Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22, 14351443.
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, 4247.
Eustace, A. et al. (2007). Behavioural disturbance triggers recognition of dementia by family informants. International Journal of Geriatric Psychiatry, 22, 574579.
Harris, P. B. (2010). Dementia and dementia care: the contributions of a psychosocial perspective. Sociology Compass, 4, 249262.
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, 11011115.
Kitwood, T. and Bredin, K. (1992). Towards a theory of dementia care: personhood and well-being. Ageing and Society, 12, 269287.
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.
Krull, A. C. (2005). First signs and normalizations: caregiver routes to the diagnosis of Alzheimer's disease. Journal of Aging Studies, 19, 407417.
Lyman, K. A. (1989). Bringing the social back in: a critique of the biomedicalization of dementia. The Gerontologist, 29, 597605.
Mays, N. and Pope, C. (1995). Rigour and qualitative research. BMJ, 311, 109112.
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, 263269.
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, 2430.
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, 10701077.
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:; last accessed 11 May, 2015.
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, 527532.
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, 489496.
QSR (2012). NVivo Qualitative Data Analysis Software. Melbourne: QSR International Pty Ltd.
Quinn, C., Jones, I. R. and Clare, L. (2016). Illness representations in caregivers of people with dementia. Aging and Mental Health, 21, 19.
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, 337347.
Sandelowski, M. (2012). Metasynthesis of qualitative research. In Cooper, H. (ed.), APA Handbook of Research Methods in Psychology: Volume 2. Research Designs (pp. 1936). Washington DC, USA: American Psychological Association.
Sandelowski, M. (2015). A matter of taste: evaluating the quality of qualitative research. Nursing Inquiry, 22, 8694.
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, 191200.
Speechly, C. M., Bridges-Webb, C. and Passmore, E. (2008). The pathway to dementia diagnosis. Medical Journal of Australia, 189, 487489.
Teel, C. S. and Carson, P. (2003). Family experiences in the journey through dementia diagnosis and care. Journal of Family Nursing, 9, 3858.
Thomas, J. and Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45.
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, 480487.
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, 13931404.
Walsh, D. and Downe, S. (2006). Appraising the quality of qualitative research. Midwifery, 22, 108119.
WHO (2012). Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organisation. Available at:; last accessed 11 May 2015.
Wilson, H. S. (1989). Family caregivers: the experience of Alzheimer's disease. Applied Nursing Research, 2, 4045.
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, 5560.


Related content

Powered by UNSILO
Type Description Title
Supplementary materials

Rogers supplementary material
Supplementary Tables

 Word (27 KB)
27 KB

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

  • Kirrily Rogers (a1) (a2), Honor Coleman (a1), Amy Brodtmann (a2) (a3), David Darby (a2) (a3) and Vicki Anderson (a1) (a4)...


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed.