BACKGROUND

Care partners are crucial in providing informal care

to people with Alzheimer’s disease1. The literature

demonstrates that challenges associated with caring for a

person with Alzheimer’s or other dementias, such as stress,

burden and loneliness, can have a detrimental impact on

mental and physical health and wellbeing across the care

partnership dyad1–4. The literature indicates cultural and

structural variation in caregiving5, yet there are few multicountry

studies exploring the experiences of care partners

across different cultural norms and support systems.

OBJECTIVE

In partnership with Alzheimer’s Disease International (ADI)

and Roche, this study explored (1) wellbeing and burden,

(2) satisfaction with support, and (3) support needs, among

care partners from three different continents (Europe, North

America, and South America).

METHODS

An online survey, administered to participants from the

US, UK and Brazil, investigated care partners’ anxiety

and depression, using the Patient Health Questionnaire6,

loneliness, using the UCLA Loneliness Scale7, burden,

using the Caregiver Burden Inventory time-dependence

subscale8, and satisfaction with and need for pre-defined

categories of support. Data were collected between April

2022 and March 2023. Recruitment was through existing

carer networks and social channels, led by ADI member

organisations in each country, and research portals in the UK

and US. Descriptive statistics were calculated using SPSS,

and multivariate analyses examined factors predicting care

partner wellbeing, burden, satisfaction with and need for

each support domain.

RESULTS

SAMPLE CHARACTERISTICS

A total of 452 care partners participated (82.3% female;

mean age 56.18 years, SD 12.75) from the US (47.8%), UK

(28.1%) and Brazil (24.1%). 68.0% cared for a parent, 51.1%

co-habited with the person they cared for, and 69.3% were

the main care partner. 94.4% had received a dementia

diagnosis, including Alzheimer’s (65.3%), mixed dementia

(11.1%), vascular dementia (9.2%), and other (14.4%). The

largest proportion (44.5%) cared for someone with severe

dementia (‘cannot function independently at home or be

taken outside the home’), and 71.4% cared for someone

with at least one co-morbidity. 52.9% reported being in

full-time, part-time or self-employment. 71.7% reported an

impact on employment due to care partnering (Figures 1-2).

CARE PARTNER WELLBEING & BURDEN

Participants reported experiencing depression and anxiety

(mild 32.5%, moderate 22.4%, severe 16.9%), loneliness

(58.8%) and burden (58.9%).

Linear regression analysis: Greater hours per week caring

significantly predicted all three measures of wellbeing and

burden. Of interest, impact on employment significantly

predicted loneliness, depression and anxiety, but not burden,

while lower perceived community standing was the strongest

and most significant predictor of loneliness (Figure 3).

SATISFACTION WITH SUPPORT

Participant satisfaction varied across support type (Figure 4).

Linear regression analysis: Loneliness was the strongest

predictor of lower satisfaction with support (βs -0.132 to

-0.315, p <0.001 to 0.042). Other significant predictors were

depression and anxiety, being the main care partner, and

gender of both care partner and person being cared for (p

0.010 to 0.037).

SUPPORT NEEDS

Using pre-defined categories of support, participants

reported what would make their caring role easier (Figure 5).

Linear regression analysis: The most common predictor

of support needs was depression and anxiety, (βs 0.114 to

0.244, p <0.001 to 0.045), followed by younger age and

impact on employment (p <0.001 to 0.029). Other significant

predictors included loneliness, burden, being the main care

partner, and length of time in care role (p <0.001 to 0.033).

COUNTRY VARIATION

Participants from Brazil reported higher rates of depression,

anxiety, loneliness and burden, as well as the greatest

support needs across all domains. Tests of significance

examining between-country differences are not reported

due to differences in sampling methods.

LIMITATIONS

Given the time of data collection (2022-23), restrictions

introduced due to COVID-19 are likely to have impacted

both wellbeing and access to support services.

CONCLUSIONS

This multi-country study offers insight into the impact of

informal caregiving on wellbeing, burden and daily life –

factors evidenced in the literature to be associated with

poorer mental and physical health outcomes across the care

dyad1-4. Investigating experiences and predictors of support

satisfaction and needs across three continents, the data

underscore the ways in which care partner experiences vary

both between and within different countries. Our findings

highlight the importance of tailoring care partner support

services to diverse cultural and structural contexts.

 

This research was carried out by researchers at the University of

Westminster (London, UK), in partnership with Alzheimer’s Disease

International (ADI) and Roche. Roche provided funding and, alongside

ADI, contributed to the development and design of the study. Writing

and analysis were supported by Studio Health.