Empirical Studies

Evolution of lived experience of dementia caregivers after a psycho-educational group: an interpretative phenomenological analysis

Corresponding Author

Eliane Dovi MA

PhD Candidate

[email protected]

orcid.org/0000-0002-9291-5173

Research Center of Clinical psychology, psychopathology and psychosomatics, Université libre de Bruxelles, Brussels, Belgium

Correspondence to:

Eliane Dovi, Research Centre of Clinical psychology, psychopathology and psychosomatics, Université libre de Bruxelles, Campus du Solbosch, CP 122, Avenue Franklin Roosevelt 50, 1050 Brussels, Belgium.

E-mail: [email protected]

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Jean-Christophe Bier MD,

Jean-Christophe Bier MD

Neurologist

orcid.org/0000-0002-3396-1858

Neurology Department, Erasmus Hospital, Brussels, Belgium

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Carole Fantini-Hauwel PhD,

Carole Fantini-Hauwel PhD

Professor

orcid.org/0000-0002-1520-5178

Research Center of Clinical psychology, psychopathology and psychosomatics, Université libre de Bruxelles, Brussels, Belgium

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Eliane Dovi MA,

Corresponding Author

Eliane Dovi MA

PhD Candidate

[email protected]

orcid.org/0000-0002-9291-5173

Research Center of Clinical psychology, psychopathology and psychosomatics, Université libre de Bruxelles, Brussels, Belgium

Correspondence to:

E-mail: [email protected]

Search for more papers by this author

Jean-Christophe Bier MD,

Jean-Christophe Bier MD

Neurologist

orcid.org/0000-0002-3396-1858

Neurology Department, Erasmus Hospital, Brussels, Belgium

Search for more papers by this author

Carole Fantini-Hauwel PhD,

Carole Fantini-Hauwel PhD

Professor

orcid.org/0000-0002-1520-5178

Research Center of Clinical psychology, psychopathology and psychosomatics, Université libre de Bruxelles, Brussels, Belgium

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First published: 08 November 2020

https://doi.org/10.1111/scs.12929

Citations: 2

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Abstract

The ‘Help and Support for Caregivers and Patients’ psycho-education group aims to educate and support dementia caregivers. Fourteen spousal caregivers were interviewed before (T1) and after (T2) psycho-education participation. Intrapersonal processes and the potential evolution of lived experience were explored using longitudinal interpretative phenomenological analysis. Three trajectory groups were identified at T1: proactive help-seekers, passive but hopeful caregivers and ambivalent caregivers. T2 interviews revealed that caregivers experienced growth in their role, benefitted from peer interactions, feelings of guilt were addressed and they were using out-of-home dementia-specific services. Identifying beliefs or attitudes that might prevent caregivers from getting help or support is important. Caregiver well-being remains a public health priority and furthering our knowledge about their complex and changing needs is paramount to provide well-designed and tailored resources.

Conflict of interest

J-C Bier is a member on the medical council of the Erasmus hospital and of the scientific council for Alzheimer Belgique ASBL, recipient of the Malou Malou prize from the Fondation Roi Baudouin for the realisation of the ‘Help and Support for Caregivers and Patients’ programme. The other authors report no conflict of interest.

References

1Samia LW, Hepburn K, Nichols L. “Flying by the seat of our pants”: what dementia family caregivers want in an advanced caregiver training program. Res Nurs Health 2012; 35: 598–609.
10.1002/nur.21504
PubMed Web of Science® Google Scholar
2Cheng S, Au A, Losada A, Thompson LW, Gallagher-Thompson D. Psychological interventions for dementia caregivers: what we have achieved, what we have learned. Curr Psychiatry Rep 2019; 21: 1–12.
10.1007/s11920-019-1045-9
CAS PubMed Web of Science® Google Scholar
3 Dementia. (2020, September 22). https://www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/areas-of-work/dementia (last accessed 21 September 2020).
Google Scholar
4Cès S, Flusin D, Anne-Sophie L, Jean M, Nathalie P, Olivier S. Les aidants proches des personnes âgées qui vivent à domicile en Belgique : un rôle essentiel et complexe. Étude de données. 2016, Fondation Roi Baudoin, Bruxelles.
Google Scholar
5Castro D, Dillon C, Machnicki G, Allegri RF. The economic cost of Alzheimer's disease: family or public-health burden? Dement Neuropsychologia 2010; 4: 262–67.
10.1590/S1980-57642010DN40400003
PubMed Google Scholar
6Pinquart M, Sörensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriat 2006; 18(4): 577–95.
10.1017/S1041610206003462
PubMed Web of Science® Google Scholar
7Walter E, Pinquart M. How effective are dementia caregiver interventions? An updated comprehensive meta-analysis. The Gerontologist 2019; 20: 1–11.
CAS Google Scholar
8Kishita N, Hammond L, Dietrich CM, Mioshi E. Which interventions work for dementia family carers? an updated systematic review of randomized controlled trials of carer interventions. Int Psychogeriatr 2018; 30: 1679–96.
10.1017/S1041610218000947
PubMed Web of Science® Google Scholar
9Arango-Lasprilla JC, Panyavinm MS, Herrera Merchan EJ, Perrin PB, Arroyo- Anllo EM, Snipes DJ, Arabia J. Evaluation of a group cognitive- behavioral dementia caregiver intervention in Latin America. Am J of Alzheimer’s DiseaseOther Dementias 2014; 1–8.
Google Scholar
10Mittelman MS, Roth DL, Coon DW, Haley WE. Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. Am J of Psychiatry 2004; 161: 850–56.
10.1176/appi.ajp.161.5.850
PubMed Web of Science® Google Scholar
11Negovanska V, Hergueta T, Guichart-Gomez E, Dubois B, Srazin M, Bungener C. Bénéfice d’un programme cognitivo-comportemental et pluridisciplinaire de prise en charge de la maladie d’Alzheimer sur l’anxiété du conjoint: étude française ELMMA. Revue Neurologique 2011; 167: 114–22.
10.1016/j.neurol.2010.07.002
CAS PubMed Web of Science® Google Scholar
12Chien L, Chu H, Guo J, Liao Y, Chang L, Chen C, Chou K. Caregiver support groups in patients with dementia: a meta-analysis. Int J of Geriatric Psychiatry 2011; 26: 1089–98.
10.1002/gps.2660
PubMed Web of Science® Google Scholar
13Elvish R, Lever S, Johnstone J, Cawley R, Keady J. Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence. Counsell Psychother Res 2013; 13: 106–25.
10.1080/14733145.2012.739632
Google Scholar
14Rotrou JD, Cantegreil I, Faucounau V, Wenisch E, Chausson C, Jegou D, Rigaud A. Do patients diagnosed with Alzheimer's disease benefit from a psycho-educational programme for family caregivers? A randomised controlled study. Int J of Geriatr Psychiatry 2010; 26: 833–42.
10.1002/gps.2611
PubMed Web of Science® Google Scholar
15Brown NW. Psychoeducational groups: Overview and models. In Psychoeducational Groups: Process and Practice. 2018, Routledge, New York.
10.4324/9781315169590-1
Google Scholar
16Dickinson C, Dow J, Gibson G, Hayes L, Robalino S, Robinson L. Psychosocial intervention for carers of people with dementia: what components are most effective and when? A systematic review of systematic reviews. Int Psychogeriatr 2016; 29: 31–43.
10.1017/S1041610216001447
PubMed Web of Science® Google Scholar
17Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? an updated meta-analysis. Gerontologist 2002; 42: 356–72.
10.1093/geront/42.3.356
PubMed Web of Science® Google Scholar
18Sørensen LV, Waldorff FB, Waldemar G. Early counselling and support for patients with mild Alzheimer's disease and their caregivers: a qualitative study on outcome. Aging Ment Health 2008; 12: 444–50.
10.1080/13607860802224342
PubMed Web of Science® Google Scholar
19Durepos P, Kaasalainen S, Carroll S, Papaioannou A. Perceptions of a psychoeducation program for caregivers of persons with dementia at end of life: a qualitative study. Aging Ment Health 2017; 23: 263–71.
10.1080/13607863.2017.1399347
PubMed Web of Science® Google Scholar
20Lavoie JP, Ducharme F, Lévesque L, Hébert R, Vézina J, Gendron C, Préville M, St-Laurent C, Voyer L. Understanding the outcomes of a psycho-educational group intervention for caregivers of persons with dementia living at home: a process evaluation. Aging Ment Health 2005; 9: 25–34.
10.1080/13607860412331323827
CAS PubMed Web of Science® Google Scholar
21Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. 2009, Sage Publications, Los Angeles.
Google Scholar
22Farr J, Nizza IE. Longitudinal Interpretative Phenomenological Analysis (LIPA): a review of studies and methodological considerations. Qualitative Res in Psychol 2019; 16: 199–217.
10.1080/14780887.2018.1540677
Web of Science® Google Scholar
23Mcdonough MH, Sabiston CM, Ullrich-French S. The development of social relationships, social support, and posttraumatic growth in a dragon boating team for breast cancer survivors. J Sport Exercise Psychol 2011; 33: 627–48.
10.1123/jsep.33.5.627
PubMed Web of Science® Google Scholar
24Finkel S, Silva JCE, Cohen G, Miller S, Sartorius N. Behavioral and psychological signs and symptoms of dementia: a consensus statement on current knowledge and implications for research and treatment. Int J of Geriatr Psychiatry 1997; 12: 1060–61.
10.1002/(SICI)1099-1166(199711)12:11<1060::AID-GPS658>3.0.CO;2-M
Web of Science® Google Scholar
25Merrilees JJ, Bernstein A, Dulaney S, Heunis J, Walker R, Rah E, Choi J, Gawlas K, Carroll B, Ong P, Feuer J, Braley T, Clark AM, Lee K, Chiong W, Bonasera SJ, Mill BL, Possin KL. The Care Ecosystem: promoting self-efficacy among dementia family caregivers. Dementia 2018; 1–19.
Google Scholar
26Waligora KJ, Bahouth MN, Han HR. the self-care needs and behaviors of dementia informal caregivers: a systematic review. The Gerontologist 2019; 59: 565–83.
Web of Science® Google Scholar
27Tatangelo G, Mccabe M, Macleod A, You M. “I just don’t focus on my needs”. The unmet health needs of partner and offspring caregivers of people with dementia: a qualitative study. Int J of Nurs Studies 2018; 77: 8–14.
10.1016/j.ijnurstu.2017.09.011
PubMed Web of Science® Google Scholar
28Nehrig N, Shifrin M, Abraham K. The benefits and limitations of a behavioral intervention for caregivers of dementia patients: a qualitative study. Cognitive and Behav Practice 2019; 26: 562–74.
10.1016/j.cbpra.2018.10.004
Web of Science® Google Scholar
29Tompkins SA, Bell P. Examination of a psychoeducational intervention and a respite grant in relieving psychosocial stressors associated with being an Alzheimers caregiver. J Gerontol Soc Work 2009; 52: 89–104.
10.1080/01634370802561877
PubMed Google Scholar
30Phillipson L, Jones SC. Use of day centers for respite by help-seeking caregivers of individuals with dementia. J Gerontol Nurs 2012; 38: 24–34.
10.3928/00989134-20120307-05
PubMed Web of Science® Google Scholar
31Roberts E, Struckmeyer KM. The impact of respite programming on caregiver resilience in dementia care: a qualitative examination of family caregiver perspectives. INQUIRY 2018; 55: 1–11.
Web of Science® Google Scholar

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Volume35, Issue4

December 2021

Pages 1134-1142

Evolution of lived experience of dementia caregivers after a psycho-educational group: an interpretative phenomenological analysis

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Evolution of lived experience of dementia caregivers after a psycho-educational group: an interpretative phenomenological analysis

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