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

• Published in: Aging & mental health Vol. 26; no. 11; pp. 2307 - 2315
• Main Authors: Marques, Maria J., Tan, Eva Y.L., Woods, Bob, Jelley, Hannah, Kerpershoek, Liselot, Hopper, Louise, Irving, Kate, Bieber, Anja, Stephan, Astrid, Sköldunger, Anders, Sjölund, Britt-Marie, Selbaek, Geir, Røsvik, Janne, Zanetti, Orazio, Portolani, Daniel M., Marôco, João, de Vugt, Marjolein, Verhey, Frans, Gonçalves-Pereira, Manuel
• Format: Journal Article
• Language: English
• Published: England Routledge 01.11.2022; Taylor & Francis Ltd
• Subjects: Alzheimer's disease; Caregiver burden; Caregivers; Caregivers - psychology; Change agents; Coherence; Dementia; Dementia - epidemiology; Dementia - psychology; Dementia disorders; family caregivers; Growth models; Humans; Interpersonal relations; Longitudinal Studies; Measures; Medicin och hälsovetenskap; Neuropsychiatric symptoms; Perceived social support; Positive emotions; Psychiatry; Quality; Quality of life; Quality of Life - psychology; Sense of Coherence; Social interactions; Social networks; Social organization; Social support; Spouses - psychology; Stress; Symptoms; Trajectory analysis; social support; family caregivers; Sense of Coherence; Alzheimer’s disease; neuropsychiatric symptoms; longitudinal studies
• ISSN: 1360-7863; 1364-6915; 1364-6915
• DOI: 10.1080/13607863.2021.1969641

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. 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). 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. 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.