Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study

Abstract

Objectives To identify factors associated with QOL in carers of persons with young-onset Alzheimer’s (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period. Methods Eighty-eight family carers of community-dwelling people with young-onset AD (n = 50) and FTD (n = 38) recruited from Nordic memory clinics. Carer QOL was assessed using the Quality of Life–Alzheimer’s Disease questionnaire. Carer burden was assessed by the Relatives’ Stress scale and depressive symptoms by the Montgomery-Åsberg Depression Rating Scale. Factors associated with QOL in YOD and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses. Results We identified two carer groups of persons with YOD following trajectories with better (n = 53) versus poorer (n = 30) QOL. Carers who reported more burden at baseline had greater odds of belonging to the poorer QOL group (OR 1.1 (1.0–1.2), p = 0.004). Analyses of the development in QOL showed a significant decline in QOL–AD scores among the AD-carers from baseline to two-year follow-up (p = 0.044), while the score remained stable among the FTD-carers. The FTD-carer group had significantly higher mean QOL–AD scores at one- and two-year follow-up (p = 0.022 and 0.045, respectively). However, the difference between the two groups regarding time trend was non-significant. Poorer QOL was associated with increased carer burden (p = 0.01), more depressive symptoms (p = 0.024), and being male carer (p = 0.038). Conclusion Higher care burden, more depressive symptoms, and being a male carer was associated with poorer QOL in family carers for persons with YOD. Carers of persons with AD may experience greater challenges in preserving QOL compared to carers of persons with FTD.

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

“…Approximately one-third of the participants reported that the program contained a considerable amount of information, which may explain why nine out of the nineteen persons agreed that it was difficult to allocate time to follow it. For caregivers, it can be difficult to find time to follow such a program as they already have to balance caregiving with other responsibilities, such as work, raising children, and maintaining social relationships ( Ducharme et al, 2013 ; Hvidsten et al, 2019 ). Interviewees revealed that a table of contents would facilitate more direct access to the desired information and would improve the navigation through the program content.…”

“…Spousal caregivers are often in their 50s, they may be employed, and can have children living at home ( Cartwright et al, 2021 ; Grundberg et al, 2021 ). This can result in difficulty in balancing the caregiving role with professional responsibilities, or financial problems due to reduced working hours or early retirement ( Ducharme et al, 2013 ; Hvidsten et al, 2019 ; Mayrhofer et al, 2021 ; van Vliet et al, 2010 ). Additionally, caring for a family member with YOD is known to result in profound shifts in family roles and relationships ( Cabote et al, 2015 ; Svanberg et al, 2011 ).…”

Carer burden and psychological distress in young‐onset dementia: An Australian perspective

“…As dementia is seen as a disease of the elderly with community‐based services biased towards those older than 65 years old, carers of these younger people may feel less supported and are at higher risk of adverse effects. For example, it has been reported that carers of YOD were twice as likely to report feeling burdened and experience worse quality of life compared to carers of dementia of later onset 5–7 . In response, the Australian YOD Special Interest Group 8 called for prioritisation of investments in YOD carer support research and funding.…”

“…Behavioural disturbance including aggression, apathy and disinhibition, often present in behaviour variant frontotemporal dementia, are associated with higher levels of burden on carers 7,22 . Duration of dementia has mixed results 6,19,20 . The degree of cognitive impairment in YOD was not shown to predict carer burden 7,20–24 …”

“…For example, it has been reported that carers of YOD were twice as likely to report feeling burdened and experience worse quality of life compared to carers of dementia of later onset. [5][6][7] In response, the Australian YOD Special Interest Group 8 called for prioritisation of investments in YOD carer support research and funding. There has been a similar commitment in a consortia of 6 European countries.…”