Trajectories of relationship quality in dementia: a longitudinal study in eight European countries

Abstract

Objectives

Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change.

Methods

We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM).

Results

RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers’ RQ, whereas social support was associated with more positive RQ trajectories.

Conclusion

This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.

Keywords:

• Alzheimer’s disease
• family caregivers
• longitudinal studies
• Sense of Coherence
• neuropsychiatric symptoms
• social support

Acknowledgements

This is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The Actifcare Consortium partners are: Coordinator: Maastricht University (NL): Frans Verhey (scientific coordinator, WP1 leader). Consortium members: Maastricht University (NL): Marjolein de Vugt, Claire Wolfs, Ron Handels, Liselot Kerpershoek. Martin-Luther University Halle-Wittenberg (DE): Gabriele Meyer (WP2 leader), Astrid Stephan, Anja Bieber, Anja Broda, Gabriele Bartoszek. Bangor University (UK): Bob Woods (WP3 leader), Hannah Jelley. Nottingham University (UK): Martin Orrell. Karolinska Institutet (SE): Anders Wimo (WP4 leader), Anders Sköldunger, Britt-Marie Sjölund. Oslo University Hospital (NO): Knut Engedal, Geir Selbaek (WP5 leader), Mona Michelet, Janne Rosvik, Siren Eriksen. Dublin City University (IE): Kate Irving (WP6 leader), Louise Hopper, Rachael Joyce. Alzheimer’s Research Unit-Memory Clinic, IRCCS ‘Centro S.Giovanni di Dio (IT): Orazio Zanetti, Daniel M. Portolani. Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT): Manuel Gonçalves-Pereira, Maria J. Marques, Conceição Balsinha (FCT – JPND-HC/0001/2012).

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The Actifcare project was supported through the following funding organisations under the aegis of the EU Joint Programme – Neurodegenerative Disease Research (JP ND): Germany, Ministry of Education and Research; Ireland, Health Research Board; Italy, Ministry of Health; the Netherlands, The Netherlands Organization for Health Research and Development; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCTJP ND‐HC/0001/2012); Sweden, The Swedish Research Council for Health, Working Life and Welfare; United Kingdom, Economic and Social Research Council. The work of Maria J. Marques was supported by the FCT and the Human Potential Operational Programme (P OP H) of the European Social Fund (FCT-PD/BD/128011/2016).