Unpaid caregivers provide vital support to family members with dementia. These individuals have been variously termed family caregivers, informal caregivers or care partners. Although this support may be considered rewarding under some circumstances, in many cases it is challenging and highly stressful. International Psychogeriatrics recently devoted an entire issue to this important topic containing seven articles from seven different countries as highlighted in an accompanying editorial (Jeste et al., Reference Jeste, Mausbach and Lee2021). The editorial supports the concept of “care partners” recommending that they should be included as important members of the healthcare team who can help to inform policy, education and research.

The World Health Organization published an evidence profile on caregiver support in 2017 related to their Integrated Care for Older People guidelines. The report notes that 349 million people worldwide are estimated to be care-dependent, of whom more than 100 million are older people, 60 years of age and over. The report notes that in most countries care of older people is provided by informal caregivers and that the majority of primary caregivers are women. The report also notes that in many low- and middle-income countries formal systems of long-term care are poorly developed compounding the need for informal caregiving. Based on a review of the evidence with consideration of benefits and harms, values and preferences, feasibility and equity, the guideline development group recommended that psychological interventions, training and support should be offered to family members and other informal caregivers of care-dependent older people, particularly but not exclusively when their need for care is complex and extensive and/or there is significant caregiver strain. The authors also noted that the vast majority of primary studies to date were carried out in high-income countries and also that there are few available trials focused specifically on caregivers of older adults with chronic or disabling conditions, other than dementia. They suggest that psychological interventions delivered by trained nonspecialists could represent a feasible and effective approach, which could be beneficial to all health systems worldwide given the increasing health demands in the context of aging populations.

Although there is some evidence that caregiving can be associated with positive outcomes (Pione et al., Reference Pione, Spector, Cartwright and Stoner2021; Quinn and Toms, Reference Quinn and Toms2019), there is also considerable evidence that caregiving can be associated with poor health (Brodaty and Donkin, Reference Brodaty and Donkin2009; Funk, Reference Funk and Rootman2021). Those who are caring for people with complex needs, cognitive impairment and are experiencing greater subjective caregiver burden are more likely to have negative health outcomes (Black et al., Reference Black2010; Elmore, Reference Elmore, Talley, Fricchione and Druss2014). Caregiving can also negatively affect mental health when caregivers are older, less healthy, share their residence, have inflexible workplaces, lower income and when they are women, and members of ethnic minority groups and/or new immigrants (Navaie-Waliser et al., Reference Navaie-Waliser, Feldman, Gould, Levine, Kuerbis and Donelan2002; Pinquart and Sorensen, Reference Pinquart and Sörensen2005; Wang et al., Reference Wang, Shyu, Chen and Yang2011; Watson et al., Reference Watson, Tatangelo and McCabe2019). There is also recent evidence that other variables associated with caregiving stress include being an adult child rather than a spouse, greater dependency of the care recipient and low level of perceived support (Teahan et al., Reference Teahan, Lafferty, Cullinan, Fealy and O’Shea2021). Caregiver stress is also an important contributor to early nursing home admission (Terum et al., Reference Terum, Testad, Rongve, Aarsland, Svendsboe and Andersen2021).

There is some evidence indicating a moderate degree of effectiveness of psychoeducational and/or psychotherapeutic interventions on a variety of outcome measures. These interventions may be more successful in improving the mental health and subjective well-being of caregivers, rather than their physical health (Funk, Reference Funk and Rootman2021). There is certainly evidence to suggest that outcomes such as caregiver distress, depression, subjective burden and perceived confidence are positively impacted (Cheng et al., Reference Cheng2020; Lee et al., Reference Lee, Ryoo, Chung, Anderson, Rose and Williams2020). There is some evidence that interventions of longer duration that are tailored to the specific needs of caregivers and provide direct contact with peers and other professionals are more beneficial (Funk, Reference Funk and Rootman2021). It appears that multicomponent interventions that combine a variety of strategies are more likely to be successful (Cheng et al., Reference Cheng2020). It has been suggested that providing either education or social support alone may be insufficient (Brodaty et al., Reference Brodaty, Green and Koschera2003; Pillemer and Suitor, Reference Pillemer and Suitor2002). Of special importance during the current pandemic and beyond, there is evidence that Internet-based virtual interventions can be beneficial for caregivers who are in remote locations or nearby (Hopwood et al., Reference Hopwood2018; Marziali and Garcia, Reference Marziali and Garcia2011; Wasilewski et al., Reference Wasilewski, Stinson and Cameron2017).

Sadavoy et al. in Toronto, Canada, have spent a number of years pioneering a highly innovative program for the support of family caregivers, who are caring for individuals with dementia. The program is called the Reitman Centre CARERS program. They have published two recent papers describing the outcome of this program, including one in this journal (Sadavoy et al., Reference Sadavoy, Sajedinejad and Chiu2021, Reference Sadavoy, Sajedinejad and Chiu2022). The first paper is a nonrandomized quasi-experimental, pre−post evaluation, which was carried out across multiple sites. The program was provided at 15 different settings in community agencies and hospital-based locations in two different Canadian provinces (Ontario and Alberta) as well as at one site in Israel. The CARERS program is an acronym for coaching, advocacy, respite, education, relationship and simulation. The model integrates a variety of evidence-based techniques including skills training, problem-solving psychotherapy and education. These are delivered in a group therapy format facilitated by health professionals. Sadavoy et al. (Reference Sadavoy, Sajedinejad and Chiu2022) describe the program as being built on evidence-informed clinical assumptions including specificity of education and information, therapeutic emotional management, specific skills training and problem-solving skills. The program is an 8-week intensive small group intervention for between four and six family caregivers of individuals with dementia. Spousal caregivers and adult child caregivers are separated into different groups because the needs of each of these groups are quite different. The program also utilizes an innovative approach of simulation with specially trained standardized patients. The caregivers for the study were entered into the trial over a 4-year period. Participants were required to have sufficient emotional and physical capacity to participate in the assessment and training sessions.

A total of 264 caregivers who were providing care to community-dwelling family members were entered into the study. The authors concluded that caregivers showed significant positive change on post-intervention outcome measures of stress, depression, burden, competence, role captivity, overload, mastery, coping and reaction to memory issues. They reported that the intervention showed especially robust effect sizes in caregivers who were more compromised. With respect to limitations and generalizability, the authors note that this was a nonrandomized study sample with the potential for unintended bias. They note that 80% of the caregivers had an educational level beyond high school, which is much higher than the average for Canadians. They suggest that a more educated group may have been more aware of the need for help and the availability of various options, which may have improved their capacity to benefit from the program. They also note that although this was carried out across multiple sites, they did not examine regional or organizational differences. They emphasize that the absence of a control group limits the degree of certainty the improvement was solely produced by the intervention. They also highlighted the need for similar studies across diverse socioeconomic, cultural and language groups.

In the second paper, family caregivers were evaluated before and after completion of the same 8-week program and compared to a waitlist control group (Sadavoy et al., Reference Sadavoy, Sajedinejad and Chiu2021). The results of this study also indicated the effectiveness and superiority of the CARERS program over usual care on a variety of measures including caregivers’ perceived stress, depression, burden, confidence, role overload, emotion and avoidance-focused coping.

Funk (Reference Funk and Rootman2021) notes that some caregiver interventions have struggled with scale-up, sustainability, uptake or adherence. Sadavoy et al. have had success on this front being able to expand the program to over 40 sites in Ontario through a provincial program entitled Enhancing Care for Ontario Care Partners. Additionally, funding by the Canadian Federal Government has been obtained in support of a 5-year program to help caregivers employed in the workforce provide care at home. The CARERS program has also been replicated in the United States, Israel and Singapore.

Building on the recommendations of the World Health Organization (2017) described above, hopefully programs like this will be funded in many countries globally in support of the millions of family and informal caregivers who provide enormous, invaluable care and support on a daily basis. It is worth emphasizing that programs like this can potentially result in substantial savings in overall health care costs by extending the length of home-based caregiving (Cheng et al., Reference Cheng2020). Ongoing research including a focus on optimal approaches to scaling up such programs, which take into account cultural differences and intersectionality, will also prove fruitful and assist policy-makers to plan cost-effective service delivery. Jeste et al. Reference Jeste, Mausbach and Lee(2021) also note that there is an ongoing need to understand the mechanisms that make interventions more effective for caregivers, to identify optimal target groups and to understand the connection to social determinants of health including loneliness and social isolation.