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The experience of being in the family of a person with early-stage dementia - a qualitative interview study

Laila Mohrsen Busted, Dorthe S Nielsen, Regner Birkelund

Abstract


Background: A dementia diagnosis has a major effect on the lives of many people in addition to the patient. Persons with dementia often depend on their families to maintain their independence and wellbeing. When illness strikes one family member it disrupts the entire family and has consequences for all family members. To improve caring for families with dementia, we need to better understand how family members experience being in the family of a person suffering from dementia.

Aim: To explore the experience of being in the family of a person suffering from early-stage dementia.

Method: A qualitative study was conducted with 17 family members of persons with dementia. The study used semi-structured interviews and data were analysed using Braun and Clarke’s model for thematic analysis.

Results: Through analysis and interpretation of the data, 4 themes were identified: (1) Living with a stranger in the family, (2) Being trapped in a changed relationship, (3) Being short of time and (4) Depending on each other in a new way within the family. The findings show that dementia illness has a large impact on relations within and across the family and relatives are forced to change their roles within the family.

Conclusion: The results of this study contribute to extending the knowledge about dementia and its impact on family members by illustrating changes in interactions within the family. Support from healthcare professionals may be beneficial in aiding family members to cope with the new situation within the family following the dementia diagnosis.

Keywords


Anticipatory grief, anxiety, burden of illness, caring for carers, dementia, family experience, Family Health Conversations, impact of dementia, impact of dementia diagnosis, lived relationship, person-centered healthcare, psychological wellbeing of carer

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References


Papastavrou, E., Kalokerinou, A., Papacostas, S.S., Tsangari, H. & Sourtzi, P. (2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing 58 (5) 446-457.

Kaakinen, J.R., Coehlo, D.P., Steele, R., Tabacco, A. & Hanson, S.M.H. (2015). Family health care nursing: theory, practice, and research. 5th edn. Philadelphia: F.A. Davis.

Emmerson, L.C., Ben-Zeev, D., Granholm, E., Tiffany, M., Golshan, S. & Jeste, D.V. (2009). Prevalence and longitudinal stability of negative symptoms in healthy participants. International Journal of Geriatric Psychiatry 24 (12) 1438-1444.

World Health Organization. (2012). Alzheimer’s Disease International. Dementia : A Public Health Priority. Available from: http://www.who.int/mental_health/publications/dementia_report_2012/en/.

Svendsboe, E., Terum, T., Testad, I., Aarsland, D., Ulstein, I., Corbett, A. & Rongve, A. (2016). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. International Journal of Geriatric Psychiatry 31 (9) 1075-1083.

Andrén, S. & Elmståhl, S. (2008). The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. Journal of Clinical Nursing 17 (6) 790-799.

Richardson, T.J., Lee, S.J., Berg-Weger, M. & Grossberg, G.T. (2013). Caregiver Health: Health of Caregivers of Alzheimer’s and Other Dementia Patients. Current Psychiatry Reports 15 (7) 367.

Wright, L. & Leahey M. (2013). Nurses and families: A guide to family assessment and intervention. Philadelphia: F.A. Davis.

Evans, D. & Lee, E. (2014). Impact of dementia on marriage: A qualitative systematic review. Dementia 13 (3) 330-349.

Meyer, J., Cullough, J.M. & Berggren, I. (2016). A phenomenological study of living with a partner affected with dementia. British Journal of Community Nursing 21 (1) 24-30.

Pozzebon, M., Douglas, J. & Ames, D. (2016). Spouses’ experience of living with a partner diagnosed with a dementia: A synthesis of the qualitative research. International Psychogeriatrics 28 (4) 537-556.

Barca, M.L., Thorsen, K., Engedal, K., Haugen, P.K. & Johannessen, A. (2014). Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia. International Psychogeriatrics 26 (12) 1935-1944.

Chappell, N.L., Dujela, C. & Smith, A. (2014). Spouse and Adult Child Differences in Caregiving Burden. Canadian Journal on Aging 33 (4) 462-472.

Ashwill, R., Mulhall, S., Johnson, D.K. & Galvin, J.E. (2015). Caregiving experience for people with lewy body dementia: Spouse versus adult child. Alzheimer’s & Dementia 11 (7) P601.

Hall, M. & Sikes, P. (2017). “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories. Qualitative Health Research 27 (8) 1203-1214.

Joling, K.J., Windle, G., Dröes, R-M., Meiland, F., van Hout, H.P.J., MacNeil Vroomen, J., van de Ven, P.M., Moniz-Cook, E. & Woods, B. (2016). Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis. Dementia and Geriatric Cognitive Disorders 42 (3-4) 198-214.

Cabote, C.J., Bramble, M. & McCann, D. (2015). Family Caregivers’ Experiences of Caring for a Relative With Younger Onset Dementia. Journal of Family Nursing 21 (3) 443-468.

Peisah, C., Brodaty, H. & Quadrio, C. (2006). Family conflict in dementia: Prodigal sons and black sheep. International Journal of Geriatric Psychiatry 21 (5) 485-492.

Kvale, S. & Brinkmann, S. (2015). Interview - Det kvalitative forskningsinterview som håndværk. 3rd edn. Copenhagen: Hans Reitzels Forlag.

Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3 (2) 77-101.

Clarke, V. & Braun, V. (2017). Thematic analysis. Journal of Positive Psychology 12 (3) 297-298.

Richards, H.M. & Schwartz, L.J. (2002). Ethics of qualitative research: are there special issues for health services research? Family Practice 19 (2) 135-139.

Peacock, S., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L., Leipert, B.D. & Henderson,S.R. (2010). The Positive Aspects of the Caregiving Journey With Dementia: Using a Strengths-Based Perspective to Reveal Opportunities. Journal of Appled Gerontology 29 (5) 640-659.

Chan, D., Livingston, G., Jones, L. & Sampson, E.L. (2013). Grief reactions in dementia carers: A systematic review. International Journal of Geriatric Psychiatry 28 (1) 1-17.

Brown, J. (1999). Bowen Family Systems Theory and Practice: Illustration and Critique. Australian and New Zealand Journal of Family Therapy 20 (2) 94-103.

Esandi, N., Nolan, M., Alfaro, C. & Canga-Armayor, A. (2018). Keeping Things in Balance: Family Experiences of Living with Alzheimer’s Disease. Gerontologist 58 (2) e56-67.

Clemmensen, T.H., Busted, L.M., Soborg, J. & Bruun, P. (2016). The familys experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study. Dementia pii: 1471301216682602.

Kjällman-Alm, A., Norbergh, K.G. & Hellzen, O. (2013). What it means to be an adult child of a person with dementia. International Journal of Qualitative Studies on Health and Well-being 8 (1) 21676.

Fusch, P.I. & Ness, L.R. (2015). Are we there yet? Data saturation in qualitative research. Qualitative Report 20 (9) 1408-1416.

Benzein, E., Olin, C. & Persson, C. (2015). “You put it all together” - families’ evaluation of participating in family health conversations. Scandinavian Journal of Caring Sciences 29 (1) 136-144.




DOI: http://dx.doi.org/10.5750/ejpch.v7i1.1628

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