Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs

Abstract

Most dementia caregiver programs focus on a single caregiver, overlooking diverse caregiving networks that include family, friends, and relatives who provide care. We conducted a scoping review of family-centered dementia caregiving programs (ie, interventions with at least 2 caregivers) to (1) describe program components; (2) identify how family members are included; (3) summarize family-level measurements used and the effectiveness of family-centered programs on these outcomes; and (4) explore if and how programs are culturally adapted. We identified 36 articles and 10 programs (individual-family programs, n = 8; multi-family group programs, n = 2). Programs included similar content and effectiveness was reported by the primary caregiver and measured at the individual level. To better support diverse caregiving networks, caregiving programs may benefit from identifying core components of caregiving programs, including best practices in engaging family caregivers, acknowledging varied family structures and the fluidity in caregiving, and measuring strengths and deficits at the family-level.

Introduction

Dementia is a progressive illness characterized by memory loss and a decline in cognitive abilities, severe enough to require help with daily tasks and independent functioning. ¹ In addition to cognitive decline, people living with dementia (PLWD) can experience symptoms such as agitation, psychosis, disturbances in sleep, depression, anxiety, and changes in eating habits with symptoms and behaviors increasing over time. ² Cognitive decline, coupled with behavioral changes brings challenges to activities of daily living (eg, bathing, toileting, eating) and instrumental activities of daily living (eg, managing finances, cooking, shopping), often lead to a lack of independence and a need for care and assistance. ³

The prevalence of dementia is projected to increase by 128% to nearly 14 million people by 2060, ¹ which will likely increase the potential impact of dementia on families. ⁴ Modifiable risk factors for dementia have been identified and include: lower levels of education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, social isolation, excessive alcohol consumption, head injury, and air pollution. ⁵ However, alongside modifiable factors, family history, age, structural racism, and cumulative disadvantage likely lead to increased risk for dementia among marginalized communities and families, with people of color being impacted at higher rates than White individuals.^5,6 As such, the prevention and management of dementia is a global public health concern ⁷ and, while promising new treatments may slow cognitive and functional decline, ⁸ PLWD will continue to rely on caregivers despite these advances.

Dementia impacts the more than 11 million informal caregivers who provide care for people living with the disease. ⁹ Informal caregivers, including biological and chosen family members and friends, often provide care for the PLWD at their own physical, emotional, and financial expense, contributing to a potentially stressful and challenging experience.^1,10-12 The demands of caring for a PLWD can also negatively impact wellbeing and social connection of caregivers as the demands of caregiving often lead to loss of social relationships, changes in employment, and reduced social and recreational activities. ¹⁰

Multiple programs for caregivers of PLWD have been developed and are effective in reducing caregiver burden, depression, and stress while improving caregiver wellbeing and mastery.^13,14 However, most programs are based on a dyadic view (ie, a single caregiver and PLWD) of caregiving and were developed for a single “primary” caregiver, potentially overlooking the complex networks or diverse family structures PLWD live within.^15,16 A recent evidence map of caregiving programs identified that only 7 of the 31 unique caregiving programs intentionally included more than one caregiver, ¹⁷ yet, research indicates more than two thirds of older adults are supported by multiple caregivers. ¹⁸ Conceptualizing caregiving as more than a dyadic experience is also reflected in research examining social connections at death, with national data indicating PLWD have an average of 9.4 close family and friends at death. ¹⁹ As such, a recent framework was proposed to guide caregiving research considering the changing demography of family caregiving. ²⁰ In the context of the changes to family composition (ie, more older adults without children), Freedman et al point to the importance of viewing caregiving as a network, rather than dyad, to meet the changing needs of older adults. While this framework takes a slightly perspective in their rationale for viewing caregiving as a network (ie, recognizing the changing demography of the family) this framework reinforces the need to view caregiving as a network, and the complexity of caring as a network, rather than a dyadic view.

In addition to viewing caregiving as a care network, rather than a single primary caregiver, ¹⁶ when developing interventions to support caregivers, it is important to consider cultural values that shape caregiving and the changes in the caregiving role due to the progressive nature of the illness. Cultural values inform norms, values, and beliefs surrounding caregiving, ²¹ with families from Black, Latino, Asian American, Native American, and Native Hawaiian backgrounds being more likely than non-Hispanic Whites to provide care in a network setting.^22-24 For example, cultural norms within Black communities highlight the importance of kinship reciprocity, intrafamily reliance, and familial obligation to provide care, making network care more common among Black families.^25-27 Relatedly, the centrality of community in many Native cultures highlights the importance of large care networks for Native PWLD and their families. ²⁸ These racial/ethnic differences in caregiving are reflected in close family and friends at death, with the largest social networks being among Latino and non-Latino Black PLWD. ¹⁹ Lastly, it is essential to acknowledge the evolving care needs and changes throughout the dementia caregiving journey, particularly when viewing caregiving as a network of individuals rather than a dyadic experience. ²⁰ Understanding how networks share tasks, experience conflict, and change as they move through the progression of the disease is essential,^29,30 as family members negotiate and re-negotiate caregiving roles.^16,24

Life course theory ³¹ and family systems theory ³² help explain how interdependency within families and viewing the family as a system are relevant to caregiving for a PLWD. Life course theory suggests that an individual’s development and wellbeing across the life course is shaped by their social pathways, historical context, and individual experiences. ³¹ An important component of life course theory within caregiving research is the concept of linked lives, which highlights the interdependency of individuals within families; the lives of each individual family member are intertwined and embedded within the lives of other family members.^16,31 Individuals within the family experience transitions or changes, which likely affect other members of the family. Family systems theory highlights the importance of interactions between family members, focusing on the collective system of the family as an important indicator of family functioning and health. ³² In other words, family systems theory suggests that even among individuals who are not providing direct care, the functioning of the family can impact their health and wellbeing. For example, a study of self-identified primary and secondary caregivers of PLWD found that secondary caregivers reported lower rates of anxiety and depression compared to primary caregivers, however, subjective burden, existence of problem behaviors, and high levels of dependence in activities of daily living were relevant risk factors for anxiety and depression among secondary caregivers. ³³ In looking at family-level outcomes, caregiving for a PLWD may negatively influence family relationships and dynamics, leading to family conflict and lower wellbeing for family members. ²⁹ Thus, the concept of linked lives can help illustrate how the stress of caregiving may impact the health of the direct caregivers, which in turn can impact the lives of others; Family systems theory illustrates how the progression of the disease can affect family interactions and functioning of the family system, regardless of whether the family members themselves are providing direct care.

Family dynamics and relationships play an important role in determining how responsibilities may or may not be shared, how family members experience and feel about the caregiving process, and how communication styles vary within families. All of these considerations can impact care, caregiver outcomes, and the care provided for the PLWD.^34,35 The continued emphasis on the primary caregiver, with minimal consideration of a caregiving network, may hinder the societal understanding of caregiving and the roles in which family and friends play, and how to better support caregivers who provide care within systems and networks. ²⁹ Thus, focusing on the dyadic model of care in caregiving programs may be inadequate to support all caregivers and may not address concepts such as family cohesion and family-level health or encourage or support families with sharing tasks, while also potentially minimizing the distress, responsibilities, negative health outcomes experienced by caregivers who do not identify as primary caregivers, yet provide effective care for the PLWD.

Current Study

A recent scoping review identified 13 family-centered dementia caregiving interventions that involved at least 1 additional person who provides care and/or addresses issues related to the broader social network. ³⁶ In this review, Ramachandran et al ³⁶ took an inclusive approach, including interventions that addressed issues related to the broader social network (eg, the intervention did not need to include a second individual in the intervention) and therapeutic approaches that counselors could use to support families of PLWD (eg, structural ecosystems therapy). This study was a helpful starting point in defining, identifying, and understanding family-centered caregiving programs for PLWD, rather than interventions with a dyadic focus. In the current review, we refine this focus to family-centered dementia caregiving programs that include more than 1 caregiver and are clearly delineated programs (ie, structured, scalable interventions) for more than 1 caregiver that could be widely disseminated in community organizations. Thus, we excluded therapeutic approaches that could only be deployed by trained professionals (eg, psychologists, social workers) in a clinical setting and interventions that discussed the social network broadly but did not include at least a second caregiver within the program activities.

We expanded on the prior review in 3 distinct ways. First, we aimed to describe and examine what may serve as core components of each program including the content, delivery mode, facilitator training, length, and inclusion criteria for family members. With a focus on defined programs, identifying core components or active ingredients are important in understanding why programs are effective in scaling up and maintaining fidelity to the original program during adaptation.^37,38 Core components are defined as the necessary functions, principles, or activities that are necessary to produce desired outcomes. ³⁷ The clear elucidation of core components are particularly relevant when culturally adapting or scaling up a program to assist with maintaining fidelity to the program while allowing for variability to best fit the cultural group or needs in dissemination. ³⁸ Second, we explored how effectiveness of family-level outcomes was evaluated. It is essential to determine the effectiveness of family-level programs using family-level measures. Consistent with the concept of linked lives and Family Systems Theory, measuring individual-level outcomes (eg, depression, caregiver burden) may not be sufficient to identify family-level changes in family-centered programs. ³⁹ Therefore, understanding how family-centered programs assess outcomes is important to evaluate their effectiveness. Third, we identified feasible cultural adaptations to family-centered programs; as the prevalence of dementia increases and the caregiving experience substantially differs across cultural/ethnic groups, tailored or culturally responsive programs are needed.^14,21,40

The purpose of this study was to build on Ramachandran et al's ³⁶ identification of 13 interventions. We aimed to:

1. Describe family-centered dementia caregiver programs.

2. Identify how family members are included in family-centered dementia caregiver programs.

3. Summarize family-level measurements used within family-centered dementia caregiver programs and the effectiveness of family-centered programs on these outcomes.

4. Explore if and how family-centered programs are culturally adapted.

Materials and Methods

We utilized a systematic methodological approach for searching, selecting, summarizing, and synthesizing the existing literature ⁴¹ on family-centered dementia care programs. More specifically, we used the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist to guide this scoping review.^42,43

Search Strategy

We started our search using the strategy described in Ramachandran et al ³⁶ to identify articles describing new interventions published between July 2021 and February 2024. We did not identify any new family-centered caregiving interventions for inclusion. Next, we searched PubMed to identify articles describing the 13 interventions identified in Ramachandran et al. ³⁶ The interventions identified by Ramachandran et al ³⁶ include: Adapted Family Work Model, Dementia Family Care Programme, Dementia Support Programme (DSP), Families Access to Memory Impairment and Loss Information, Engagement, and Supports (FAMILIES), Family Group Conferencing (FGC), Family Meetings Intervention, Information Programme for South Asian Families (IPSAF), Minnesota Family Workshop (MFW), New York University Caregiver Intervention (NYUCI), New York University Caregiver Intervention-Adult Child (NYUCI-AC), ProFamilies-Dementia, Structural Ecosystems Therapy (SET), and Two Component: Psychoeducational Intervention. To identify articles about these 13 interventions, we conducted individual searches with the name of each intervention (eg, “New York University Caregiver Intervention”) or any alternative program names (ie, Two Component: Psychoeducational Intervention is also known as behavioral management + New York University Caregiver Intervention). If the program was known by an acronym (ie, NYUCI, NYUCI-AC, FAMILIES, SET, IPSAF, FGC, and DSP), we conducted a search for the acronym and last name(s) of program developers (eg, “SET” AND “Mitrani”). A table describing the search strategy used is included as a supplemental material.

Articles were included in our review if authors described a program that included more than one caregiver in at least one aspect of the program and if the program focused on providing care for a PLWD. Articles were excluded if they were a review, evaluated the cost-effectiveness of a program, involved only one family caregiver in the program, or included caregivers who were not providing dementia-related care.

Program Selection

Our search in PubMed yielded 248 records; 1 team member independently screened the list of titles and identified 104 duplicate records (Figure 1). Title and abstracts were reviewed for the remaining 144 records, 41 of which were excluded, as they did not pertain to the 13 identified programs, resulting in 103 records. Using the aforementioned inclusion and exclusion criteria, each remaining record was available in English. This process yielded 39 peer-reviewed articles for data extraction.

Figure 1.

Article Selection Flow Diagram

While Ramachandran et al ³⁶ included 13 family-centered interventions in their review, after data extraction and re-reviewing the description of each intervention, we excluded articles related to 3 interventions. The Adapted Family Work Model ⁴⁴ and SET ⁴⁵ programs described a therapeutic approach rather than a clearly defined program. As for the IPSAF program, ⁴⁶ there was no description of how families were included. Thus, our analytic sample was comprised of ten family-centered interventions resulting in 36 articles for inclusion in this review.

Data Extraction and Analysis

The second author extracted the following data into a google spreadsheet: description of the program in the article, population served, inclusion criteria, measures used, results, and limitations identified in the article. The first and fourth authors reviewed each article, verified the extracted information, and added additional information as appropriate. We thematically analyzed the 36 articles to synthesize key findings and identify gaps in programming for caregiving families.

Results

The 36 articles ranged from research protocols and efficacy studies to randomized controlled trials and large-scale implementation with pooled data across multiple sites. For each of the 10 programs, there was at least one article where the authors evaluated the program using either qualitative or quantitative approaches. The NYUCI and NYUCI-AC were the most researched programs with 17 and 5 articles, respectively. The 10 programs were offered in 9 countries (United States, Hong Kong, Scotland, Netherlands, United Kingdom, Australia, Belgium, Israel, Portugal) and in 6 languages (English, Chinese, Dutch, Spanish, Flemish, Hebrew). Only one program, the NYUCI, was culturally adapted with 3 ethnic/cultural groups that were not the primary population for which the program was developed.

We collapsed information across articles to describe the 10 family-centered dementia caregiver programs in 2 tables: 8 individual-family programs (Table 1) and 2 multi-family group programs (Table 2). In individual-family programs, 1 or more facilitators met with each family individually, whereas in multi-family group programs, the program was offered to multiple families who met together. We include this distinction because individual-family programs can be considered direct-care clinical interventions (eg, 1 or more facilitators/clinicians providing individualized care for a family), while multi-family programs may be substantially different due to the modality themselves (eg, the inclusion of social support within the intervention), more cost-effective, and scalable to efficiently reach multiple family caregivers.^88-90 In their respective tables, we described each of the ten programs, the program delivery location(s) and language(s), inclusion criteria for the program participants, any family-level measures reported in the articles, and a summary of the findings for family-level measures. We identified any measures of social support and interview questions aimed to understand potential family-level impacts of the program.

Table 1.

Individual-Family Dementia Caregiver Programs

Author(s), year	Program components	Program delivery location(s), language(s)	Inclusion criteria for caregiver(s)	Family-level measures	Summary of family-level findings (if identified)
Dementia family care programme (n = 2)
Chien and Lee, 2008 47	A 6-month education and support group for families led by a multidisciplinary committee (including a psychiatrist, social worker, case nurse manager). Case managers received 32 hours of formal training from the research team. Each family was assigned a case manager to prioritize problem areas and formulate a plan	Hong Kong, Chinese	Being 18 years or older, living with and caring for a relative with Alzheimer’s disease for more than 3 months. Caregivers who were diagnosed with a mental illness were excluded	A six-item Social Support Questionnaire 48 was adapted for Chinese individuals 49 to measure caregiver satisfaction with social support	There was no significant difference in social support
	The program included 12 2-hour sessions (bi-weekly) with 5 phases: 1) orientation to dementia care, 2) education about dementia, 3) family role, 4) community resources, 5) program review and evaluation. The case manager also conducted home visits and education about dementia care every other week and family health assessments every other month		No additional criteria were provided
	The program included cultural tenants that respect a family orientation common in Chinese culture
Chien and Lee, 2011 50	This protocol was revised from Chien et al. 47	Hong Kong, Chinese	Being 18 years or older, living with and caring for a relative with Alzheimer’s disease, providing care for at least 4 hours per day for more than 3 months; if the caregiver or their relative had any other co-morbid mental illness during recruitment, they were excluded	A six-item social Support Questionnaire 48 was adapted for Chinese individuals 49 to measure caregiver satisfaction with social support	There was no significant difference in social support
	For the first month, each family was assigned a trained case manager to prioritize problem areas and formulate a plan		No additional criteria were provided
	For the next 5 months, the family and case manager met for 10 2-hour sessions (bi-weekly). The program included 7 themes: 1) information about the disease, 2) development of social relationships and support, 3) sharing and adapting to the emotional impact of caregiving, 4) self-care and motivation, 5) improvement of interpersonal relationships, 6) establishing support from community and healthcare, 7) home care and finance skills. One or two experienced family caregivers shared their challenges with the families during the third and fourth sessions. The case manager used a 6-step model including defining the problem, generating alternative, examining and evaluating each alternative, cognitive rehearsal of action plan, execution of the plan, and evaluation of outcomes
Dementia Support Program (DSP) (n = 1)
Ghatak, 2011 51	This is an outpatient clinic-based program that identified problem areas, ongoing management and interventions via family meetings and home visits, linkages to resources and services, and connection to services including a review of medical reports, consultation, home visits to assess safety of the environment, family meetings to discuss care strategies, coordination of care services, and assessments and ongoing status reports to physicians	United States, English	Not defined	Participants were asked how useful the family meetings coordinated by the DSP were, with 4 response categories ranging from strongly agree to strongly disagree	94% of participants positively endorsed this item. A theme included participants “felt the meetings had helped bring the family together to identify needs and create a plan, as well as itemize tasks and goals so family members could share tasks.”
Families Access to Memory Impairment and Loss Information, Engagement, and Supports (FAMILIES) (n = 2)
Sperling et al, 2020 52	This program was based on the NYUCI and included a 6-month intervention, including 2 individual counseling sessions with assessments built in, 4 family/group counseling sessions, ad hoc counseling, and access to support groups	United States, English	Identify as the primary caregiver for a community dwelling PLWD, providing care at least 3 times per week, lived in one of the 2 service areas, were emotionally and physically capable of participating	None. There was an open-ended survey question “what was the most helpful about this program?”	One of the 4 themes identified was “mobilization and strengthening of their support network.”
			No additional criteria were provided
Rice et al, 2022 a 53	Identical to the FAMILIES program, 52 other than offering it online (TeleFAMILIES)	United States, English	No changes to the FAMILIES inclusion criteria	None	N/A
Family Group Conferencing (FGC) (n = 1)
Górska et al., 2016 54	A 12-month program that focused on identifying and connecting the family to services. The program includes 5 stages: Referral to the program, preparation to understand the needs of the PLWD and their family, a family group meeting to create a family plan of care, implementation of the plan, and reviewing the plan to acknowledge its successes and gaps. This program was intentionally offered by a separate organization not affiliated with the medical team	South East Scotland, English	Having a dementia diagnosis, being referred to the team, having care needs related to the dementia diagnosis, and potential for appropriately resourced family support plan to promote wellbeing of the PLWD and their carers	Focus group questions included:	Themes included “FGC as a forum for families to meet” and “complex family dynamics determined outcomes.”
			No additional criteria were provided	How effective was FGC in helping you to co-ordinate care and support available within your family?
				How effective was FGC in facilitating partnership between you as a family and professionals involved (GP, dementia nurse, SW services, etc.)?
Family meetings intervention (n = 2)
Joling, van Marwijk, Smit et al, 2012 55 ; Joling, van Marwijk, van der Horst et al, 2012 56	Caregivers were invited to attend 6 in-person counseling sessions. The primary caregiver attended the first and last meeting individually with 4 structured family meetings including relatives and/or friends. The content covered in the 4 structured meetings was guided by the caregiver, in which relevant issues were identified and the counselor encouraged the family to problem solve and identify solutions or delegate tasks. Family meetings were held once every 2 to 3 months in the year following enrollment in the program. Counselors were trained by the research team and had an advanced degree in nursing, social work, psychology, or affiliated health profession	Netherlands, Dutch	Were the primary family caregiver of a community dwelling relative with a dementia diagnosis and had at least one family member or friend available to participate in family meetings. If there was more than one primary caregiver, the primary caregiver was identified as the coordinator of the caregiving process or who spends the most time caregiving. Caregivers who met criteria for depression or anxiety, if the PLWD was scheduled to move into a nursing home, or presented with a psychiatric co-morbidity, or were insufficient in the Dutch language, were excluded	A subscale of the Caregiver Reaction Assessment (CRA) 57 measured lack of family support	There was no significant intervention effect for family support
New York University caregiver intervention (NYUCI) (n = 12)
Drentea et al, 2006 58 ; Fauth et al, 2019 59 ; Gaugler et al, 2011 a 60 ; Gaugler et al, 2008 a 61 ; Mittelman and Bartels, 2014 62 ; Mittelman, Roth, Coon et al, 2004 63 ; Mittelman, Roth, Haley et al, 2004 64 ; Mittelman et al, 2006 65 ; Mittelman et al, 2008 66 ; Mittelman et al, 2007 67 ; Roth et al, 2005 68 ; Vernooij-Dassen et al, 2010 69	This 4-6 month long program included 3 components:1) Individual and family counseling (1-2 individual and 3-4 family sessions) with clinicians who had a background in social work, counseling, psychology or gerontology, for 4 months; content in these sessions were based on caregiver needs identified in an initial assessment	United States, United Kingdom, and Australia, English	Being a spouse of a person who was diagnosed with Alzheimer’s disease and living at home. In Mittelman, Roth, Haley et al, 64 each patient or caregiver had to have one relative living in the recruitment area	The family conflict Scale 70 was used to assess family conflict specifically related to dementia care	Caregivers who participated in the program reported higher levels of satisfaction with social support and reported a decrease in family conflict 59
			No additional criteria were provided	The social Network Questionnaire 71 was used to measure caregiver’s satisfaction with their social support	Caregivers who participated in the program reported higher levels of satisfaction with social support over a 5-year period 58
	2) Caregivers were connected to support groups, weekly			Interviews were conducted with NYUCI counselors about family counseling including prevalent problems, effective approaches, barriers and rewards, and do’s and don’ts 69	Caregivers who participated in the program reported higher levels of satisfaction with social support.62,65
	3) Ad hoc counseling was available to families, as needed				Caregivers who participated in the program reported higher levels of social support which may improve caregiver health 67
					Caregiver depression was higher when the caregiver was less satisfied with emotional support 66
					Enhancing social support through the NYUCI positively effected social support, the amount of support received, and satisfaction with social support networks 68
					Families experienced various challenges that were brought to the forefront in caregiving for a PLWD. While challenging, family counseling was rewarding. Due to the complexity of family dynamics, family counseling programs should be carried out by trained professionals 69
Cultural adaptations of NYUCI (n = 5)
Luchsinger et al, 2016 a 72 ; Luchsinger et al, 2018 a 73 ; Luchsinger et al, 2019 a 74	This program included the 3 components of the NYUCI (as described above), administered by a bilingual (English and Spanish) social worker who has experience with dementia	United States, English and Spanish	Self-identification as Hispanic, being 18-90 years old, a relation to the PLWD, physically able to provide care, not having a diagnosis of a major psychiatric disorder or severe depression, expected to live in New York City in the next 12 months, not currently receiving counseling, PLWD not living in a nursing home, not traveling for more than 2 weeks during the study, sufficient hearing, and having at least one friend or family member living in the New York Metropolitan area. Caregivers who were not Hispanic, were a formal paid caregiver, who were not caring for someone with a dementia diagnosis, or had a major psychiatric or depressive disorder, were excluded	The Stokes Social Network Scale 71 was used to measure caregiver satisfaction with their social support	Among caregivers who were very satisfied with their social network, there was a decrease in caregiver burden and perceived stress after completion of the NYUCI.73,74
Wang et al, 2021 a 75	The protocol for the Flemish adaptation is called PROACTIVE; it will consist of 2 individual and 2 family counseling sessions, at least monthly support group participation, and ad hoc counseling. Adaptations will include language translation, considerations of cultural differences in the healthcare systems and values/norms about caregiving, and cultural views of dementia using a participatory approach including the community	The Flanders region of Belgium, Flemish/Dutch	Being a primary caregiver willing to participate. Caregivers can be spouses, children, or other family members and do not need to live with an older person with early cognitive decline. Caregivers who received formal counseling or joined a support group, or had insufficient cognitive capacity, were excluded	Planned data collection includes the BelRAI social supplement to assess social engagement, social relationships, loneliness and communication	Forthcoming
			No additional criteria were provided
Werner et al, 2020 a 76	No changes were made to the NYUCI (as described above) other than translation and back-translation into Hebrew	Israel, Hebrew	Being a spouse and having the primary responsibility of caring for a person living with Alzheimer’s disease, living at home with the person with Alzheimer’s disease, able to speak Hebrew, and having at least one family member living in Israel who is willing to participate. Cognitively impaired caregivers were excluded	None	N/A
New York University Caregiver Intervention-Adult Child (NYUCI-AC) (n = 5)
Gaugler et al, 2013 77 ; Gaugler et al, 2015 78 ; Gaugler et al, 2016 79 ; Gaugler et al, 2018a a 80 ; Gaugler et al, 2018b a 81	Like the NYUCI, the program included 3 components beginning with a 4-month intervention period (see above for more information). Changes included recruiting adult child caregivers, 2 individual sessions followed by 3 family counseling sessions (instead of 4 family counseling sessions in the NYUCI) and a final individual counseling session	United States, English	Self-identifying as an adult child and the primary caregiver of a person with diagnosed Alzheimer’s disease or related dementia who visits the PLWD at least once per week and not received counseling for caregiving-related problems within a year prior to enrollment	Descriptive data of family participation (eg, relationship to caregiver and frequency of attendance) was collected in family counseling sessions	Nearly half of participants did not include family members in family counseling sessions.78,79
			No additional criteria were provided	The Stokes social Network Scale 71 was used to measure caregiver satisfaction with their social support	NYUCI-AC was not effective in improving social support or reducing role or family conflict 81
				A measure of family conflict was adapted from the caregiver Reaction Inventory 57
				Checklists were completed by caregivers at the first 4-month follow-up to assess effectiveness, including that of the family counseling sessions
Two component: Psychoeducational intervention (n = 1)
Robinson et al, 2018 82	The program included 2 components: 1) a behavioral management program based on the progressively lowered stress threshold, which was delivered by a research assistant, given to the caregiver, and updated every 6 months, and 2) either 2 1.5-hour or one 3-4-hour family session with all significant friends, family, and neighbors to build family education and support	United States, English	Self-identifying as a caregiver who spent the most time caring among the network (and providing more than 4 hours of unpaid assistance per week) and lived within 1 hour of the study site. The primary caregiver was responsible for inviting all significant family, friends, and neighbors to join in the sessions	None	N/A

Note. Bolded font indicates family involvement in the intervention.

^aIndicates articles that were not identified in Ramachandran.

Table 2.

Multi-Family Group Dementia Caregiver Programs

Author(s), year	Program components	Program delivery location(s), language(s)	Inclusion criteria for caregiver(s)	Family-level measures	Summary of family-level findings (if identified)
ProFamilies-dementia (n = 3)
Guerra, Demain et al, 2012 83 ; Guerra, Mendes et al, 2012 84 ; Guerra et al., 2013 85	Families who hoped to improve care delivery, emotional self-efficacy, and learn more about the disease were invited to participate. The program included 6, 90-minute psycho-educational multi-family group sessions (weekly) included a multidisciplinary approach involving a doctor, nurse, and social worker. Each session included 4 parts: Educational, supportive, relaxing, and task assignment with participants receiving handouts summarizing the main topics. Content in each session is clearly described in Guerra, Mendes et al. 84	Portugal, (language not identified)	Families were recruited through a health center; the only requirement provided was that the family supported a PLWD who was diagnosed within 2 years	Interviews and photo voice were used with the families to evaluate the program	Participants reported improved communication across the family and photovoice findings suggested improved family unity and quality of life
	The PLWD engaged in meaningful occupation led by a trained volunteer, and the program included a mediation service to coordinate resources for families		No additional inclusion criteria were provided
Minnesota Family Workshop (MFW) (n = 2)
Hepburn et al, 2001 86 ; Ostwald et al, 2003 87	The program consisted of 7 2-hour group training sessions (weekly) for caregivers and other family members. The trainings included the 5 main components of information provision, concept development, role clarification, belief clarification, and mastery-focused coaching. Care recipients attended a daycare-like group while training sessions occurred	United States, English	Being a relative of the PLWD who was told by a physician they had a dementia disorder and the PLWD had to be living in a community setting. The PLWD was screened and if the functional assessment staging progressed beyond 7b stage, they were excluded. At least one additional family member was required to attend the full workshop and data gathering	None	N/A

Note. Bolded font indicates family involvement in the intervention.

Program Components

Programs offered similar content including information about dementia, the caregiving role, self-care, the importance of developing social support/interpersonal relationships, community resources, coordination of care, advance care planning, and the emotional impacts of caregiving. Programs also included behavioral management approaches and strategies to support the PLWD. Individual-family programs were often tailored to identified needs by the caregiver at a baseline session, whereas multi-family group programs had a structured curriculum and included family members in all sessions. Across the 10 programs, authors provided a description of the programs, however, the assessment of fidelity to the program was only described in the process evaluation of one program, the NYUCI-AC. ⁸⁰

Programs were delivered in a variety of modes, including in person, by phone, and online and typically facilitated by a clinical provider (eg, social worker, psychologist, occupational therapist) or a combination of clinical providers who were trained to facilitate the program. Programs ranged from 6 weeks to 1 year, with long-term support groups and ad hoc counseling provided through the NYUCI, NYUCI-AC, and FAMILIES programs, as needed. There was variation in the number of individual and family counseling sessions offered in the NYUCI, but the 3 intervention components (ie, individual and family counseling, connection to support groups, ad hoc counseling) were standardized across articles and offerings of the program.

The NYUCI has been offered since 1987 and is the most established program, offered throughout the United States and across the world. The NYUCI served as the foundation for the FAMILIES program and the NYUCI-AC, which were tailored to adult children rather than spousal caregivers. While the NYUCI-AC was designed to mirror the NYUCI, nearly half of the caregivers did not complete the family counseling sessions.^78-80 A process evaluation of the NYUCI-AC identified that adult children were reluctant to include family members with them in the intervention or did not have family members who were available to participate. ⁸⁰ Findings from this process evaluation suggest that the implementation of 2 programs may be vastly different – the NYUCI-AC reached only a primary caregiver for most “families” and thus may not be a family-centered program.

Inclusion of Family Members in Family-Centered Programs

Although all 10 programs were identified as family-centered, all 10 programs required a designated “primary” caregiver. Four programs (FAMILIES, Family Meetings Intervention, NYUCI, NYUCI-AC) offered sessions specifically for the primary caregiver, which excluded other caregivers. Only 3 programs (NYUCI, Two Component-Psychoeducational Intervention, MFW) described the non-primary caregivers who were included in the programs. In some instances of the NYUCI, inclusion criteria for the non-primary caregiver (also referred to as a family member) were not defined, demonstrating inconsistencies across the articles. When inclusion criteria for a non-primary caregiver was described, it was broad and inclusive of all adults related to the PLWD, including family and/or friends. The lack of information about non-primary caregivers was also apparent in the data collected from participants. The NYUCI-AC was the only program that reported the number of sessions completed and the relationship of the non-primary caregivers to the PLWD.^78-80 In some articles, it was unclear from whom data was being collected.^51,54,86 Only 2 programs (ProFamilies-Dementia and MFW) explicitly stated they collected data from family members who participated in the intervention, yet in ProFamilies-Dementia, only a single family had 2 caregivers participate in data collection. ⁸⁵ Hepburn et al ⁸⁶ indicated all participants in MFW, regardless of whether they were primary caregivers or family members, were asked to take part in “data gathering,” but the results presented do not indicate from who, the data were collected.

Measurement of Family Outcomes

Eight programs included some type of family-level measurement. Quantitative family-level measures included the measurement of social support,^48,49,57,71 family conflict, ⁷⁰ social engagement, social relationships, and loneliness, ⁷⁵ and checklists indicating the utility of family meetings, the lack of family support, and social networks. ⁸⁰ These measures primarily focused on the description of individuals and their relationships with that person.^48,71 Alternatively, the Caregiver Reaction Assessment ⁵⁷ identified areas of family conflict specifically in caregiving, asking the caregiver to assess the extent to which the “family left me alone” or the “family works together.” Qualitatively, open-ended questions inquired about what was most helpful, how the programs helped to coordinate care, and support within the family.^52,54,83,84 Additionally, interviews with facilitators were helpful to elucidate important aspects of family counseling.^69,83 There were no family-level measures in the Two Component Psychoeducational Intervention and MFW.

Social support or other family-level measures were often included in analyses as mediating or control variables, which limits the understanding of how family-centered programs may contribute to changes in social support. Two of the programs, DSP and NYUCI, quantitatively measured family-level outcomes and identified a potentially beneficial effect in increasing social support.^51,58,59,68 However, the Dementia Family Care Programme, Family Meetings Intervention, and NYUCI-AC found no significant effect for social or family support.^{47,50,55,56,81}

Qualitative findings suggested potential positive outcomes of family-centered programs. In ProFamilies Dementia, participants reported improved communication across the family and photovoice findings suggested improved family unity and quality of life. ⁸⁴ Participants in the FGC reported the program allowed time for families to meet and illuminated the importance of family complexity and the potential impacts of the complex relationships within families on program outcomes. ⁵⁴ In FAMILIES, the analysis of a single, open-ended survey question, which may not have intended to measure family-level outcomes, identified program benefits of mobilizing and strengthening caregiver support networks. ⁵²

Cultural Adaptations of Family-Centered Programs

Four of the 10 programs were developed outside of the United States (Dementia Family Care Programme, FGC, Family Meetings Intervention, ProFamilies-dementia). Of the 6 programs developed in the United States (MFW, NYUCI, NYUCI-AC, DSP, FAMILIES, Two-Component), NYUCI was the only program adapted or culturally tailored. The NYUCI was offered to Hispanic caregivers in English and Spanish by a bilingual social worker,^72-74 with no additional changes to the program. The NYUCI was adapted in Israel, ⁷⁶ titled Lituf (an acronym standing for individual support and a Hebrew word meaning caress), translated into Hebrew, and implemented by counselors who completed a 2-day training by the developer of the program, who was bilingual in English/Hebrew. No additional changes to Lituf were described. Lastly, an article describing the protocol for the NYUCI adaptation for Flemish families, titled PROACTIVE, ⁷⁵ indicated they planned to use a participatory adaptation approach with the following changes: reduce the number of family counseling sessions from 4 to 2; translate into Flemish/Dutch; and include differences in the healthcare system and cultural views about caregiving and dementia. ⁷⁵ Across the 3 adaptations of the NYUCI which was originally developed for spouses of a PLWD, 2 of the 3 adaptations did not specify including only spouses in the eligibility criteria.

Discussion

As the prevalence of dementia increases, supporting families as they navigate caring for a PLWD will be of increasing importance. We identified ten family-centered dementia caregiving programs that intentionally included more than one caregiver. All programs identified a primary caregiver, with 4 of the programs offering sessions for only the primary caregiver which excluded other family members. The programs covered similar information about dementia and behavioral strategies to support the PLWD. These programs have been implemented across the world, primarily by clinical providers (eg, social workers, psychologists) and in a variety of modes (eg, in person, online). Inclusion criteria for caregivers were rarely specified; when they were stated, they were broad and inclusive of family and friends. While more than one caregiver was invited to participate in family-centered programs, details about who, how often, and potential outcomes for family members beyond the primary caregiver are unclear or missing from the literature. In alignment with Ramachandran et al, ³⁶ we encourage future researchers to use the term family-centered programs for interventions that include more than one caregiver in the program.

Core Components and Mechanisms of Action

There was substantial overlap in the content, strategies and delivery by a trained clinician across all 10 programs. While there were similarities across the programs, none of the articles included explicitly described the “core components” of the program, nor did they evaluate the efficacy of aspects of the programs. Despite calls for assessing fidelity and the operationalization and evaluation of active ingredients or core components,^37,91 this remains an important area of future research in understanding the mechanism of action underlying caregiving programs. The importance of understanding the mechanism of action and principles (or core components) within interventions is highlighted in the National Institutes of Health (NIH) stage model – which suggests that elucidating core components can help to understand essential elements of interventions and simplify programs. ⁹¹ While program components were rooted in theoretical frameworks such as stress and coping theory (eg, MFW ⁸⁶ ), research evaluating if and how these components led to desired outcomes was lacking in the articles reviewed. In other words, asking how a program “works” or how the core components make the program “work” is an important next step in the development and scale-up of family-centered caregiving programs.

In regards to mode of delivery, only 2 programs, MFW and ProFamilies-Dementia, were multi-family group programs, in which multiple families gathered to attend the program. MFW is no longer being implemented, as it informed the development of the Savvy Caregiver Program. ⁹² While the Savvy Caregiver Program describes the importance of family involvement and support, it is a dyadic program tailored for a single primary caregiver and does not intentionally include other family caregivers. Multi-family group programs may be able to reach the community more efficiently and offer a built-in opportunity for social support within the program design (as it is group-based). Thus, it is necessary to better understand implementation challenges and strategies these programs experience when designing multi-family group programs for dissemination and scale-up. For example, it would be helpful to understand if families are willing to engage and share comfortably in a group setting, or if it would be helpful to include both multi-family group and individual-family sessions to support families.

Challenges in Measurement

Next, we discuss 4 measurement issues we identified in this scoping review, which are: (1) although family-centered, the primary outcome of these programs was often measured solely in the primary caregiver; (2) descriptions of who and how often family members participate was minimal; (3) measurement at the family-level was infrequent and varied; (4) there was continued focus on caregiver deficits, without evaluating strengths.

The evidence supporting the effectiveness of family-centered dementia caregiving is based on changes in the primary caregiver. Only 1 article clearly stated that they leveraged outcome data from family members beyond the primary caregiver. ⁸⁵ Considering primary caregivers often provide most of the hands-on care, ⁹³ it is possible research continues to focus on intervention impacts on the primary caregiver. The focus on primary caregivers is also likely due to the societal expectation for families to provide care, which is reflected in research approaches to caregiving.^20,94 From a practical perspective, measurement and analysis beyond a dyad requires improvements in data collection and analyses to reflect the heterogeneity in caregiving networks. ⁹⁵ However, as non-primary caregivers can be impacted by the challenges of caring for a PLWD, including all caregiver voices to better understand the mechanisms and impacts of family-centered programs would likely enhance the understanding of family-centered caregiving. The importance of including data from other members of the family was identified by NYUCI facilitators, who described family problems, such as family conflicts and the historical context of family dynamics. ⁶⁹ As suggested by Vernooij-Dassen and colleagues, ⁶⁹ including data from other family members may help to elucidate important aspects of family-centered programs and program effectiveness beyond the primary caregiver. This is particularly important throughout the complex and dynamic care journey for PLWD.

It would be helpful to understand the context of who and how caregivers engage with family-centered caregiving programs. Descriptions of who is considered “family” and how often caregivers participated in programming were nearly non-existent. The NYUCI-AC was the single exception, as it clearly captured and discussed how families interacted with the program. ⁸⁰

Measurement at the family-level was infrequent. When it was measured, it varied from the identification of supportive individuals and relationships to family cohesion and interactions. Prior research indicates caregiver burden, internal resources, and physical health are common outcomes assessed among dementia caregiving interventions, whereas social support is less common. ¹⁷ In line with this, social support was rarely included as a primary outcome and instead, often included as a mediator or control variable; outcomes of interest were caregiver burden, quality of life, depression, time to residential care placement, or other commonly assessed outcomes in dyadic caregiving interventions. In taking a network, or family-centered approach, it will likely be important to understand family dynamics and changing roles beyond the broad concept of social support.

Lastly, when evaluating effectiveness, the pervasive focus on deficits is evident in family-centered caregiving programs. ⁸¹ While the challenges in supporting someone with dementia are unquestionable, understanding the deficits alongside potential strengths or positive changes may help to enhance program effectiveness. Similar to emphasizing the view of a single, primary caregiver, the focus on negative aspects of caregiving is pervasive throughout the field; in expanding beyond the dyad, it is also relevant to consider, include, and measure positive aspects of caregiving, particularly in interventions for caregivers. ⁹⁶ Family-level interventions that address the interrelated aspects of family wellbeing (eg, family functioning, resilience, health, and flourishing to better understand family-level health) are a growing public health strategy for prevention, ³⁹ and there is much to learn from other disciplines (eg, child development). However, there are important measurement challenges to overcome. As such, we strongly encourage future research to include more holistic measurements that assess strengths and deficits and include all individuals that interact with the program.

The Complexity of Family-Centered Caregiving Programs

There are many potential challenges when implementing family-centered programs. We did not identify any new interventions published since 2021, which may illustrate the challenge in implementing a program that includes more than one caregiver. As identified in the NYUCI-AC, adult children were resistant to including other family members in sessions.^78-80 Similarly, dealing with family problems can be incredibly challenging, and including a trained clinician is imperative. ⁶⁹ Beyond relationships and family dynamics, we anticipate that scheduling is likely a substantial problem, especially among families who are providing care for a PLWD. As the use of technology evolves and becomes more common in caregiving, there is a need to support long-distance caregivers and individuals within networks who may not live within close proximity to the PLWD. ⁹⁷ New interventions or articles describing these interventions may not have been published since 2021 due to the need for many researchers to pivot during the COVID-19 pandemic, shifting to the inclusion of technology rather than in-person interventions. With the adoption of offering programs virtually, it is possible dyadic caregiving interventions that are offered virtually have become more flexible and included more than one caregiver. As such, literature describing changes to dyadic caregiving interventions may help to understand how caregiving interventions have evolved to better support caregiving as a network.

Caregiving is often evaluated as a static relationship, which discounts changes in caregivers or the caregiving role throughout the progression of dementia. ¹⁵ As the disease progresses, caregiving requires an evolving skillset from caregivers; it may be particularly important to train multiple family members who can provide support for one another. Similarly, as the disease progresses, the PLWD may change which family member they prefer as a caregiver, which requires multiple family members to provide support. However, our findings revealed a single primary caregiver was identified in each family-centered caregiving program. Caregiving is a dynamic process, so it may be helpful to acknowledge role fluidity among caregivers and caregiving interventions. Similarly, most family-centered caregiving programs were brief interventions, with NYUCI, NYUCI-AC, and FAMILIES as the only programs offering long-term support. To better serve families, identifying long(er)-term support and resources is an important aspect of dementia care.

Cultural Tailoring of Family-Centered Programs

While the 10 programs were offered in 9 countries, only 1 program (NYUCI) was culturally tailored or adapted. Of the 3 adapted versions of the NYUCI, the changes described were primarily surface structure changes (eg, translation). ⁹⁸ Deep structural adaptations that consider how dynamic caregiving and family interactions are rooted in culture and cultural values, may be important in widely disseminating family-centered programs across cultural groups.^14,21,40 Considering other caregiving programs have been adapted with other communities (eg, Savvy Caregiver, STAR-C, Adult Day Service Plus), it is surprising that only one family-centered program has been culturally adapted. However, prior to culturally adapting programs, it is imperative that future researchers and program developers identify core components that are maintained to ensure fidelity to the program. ³⁷

Limitations

We used a rigorous, systematic process to identify articles that describe the ten family-centered dementia caregiving programs. However, it is possible that we missed relevant articles related to the 10 programs or overlooked other family-centered caregiving programs. Identifying family-centered caregiving programs is challenging, as unpaid caregivers are often referred to as “family caregivers,” which hindered the search strategy used. Additionally, publications typically focused on trial outcomes rather than the description of the program or intervention. As such, it is possible that we overlooked relevant information about the programs.

Implications and Future Directions

There are several important next steps in developing and evaluating programs for caregivers, including the need to move away from a dyadic view of caregiving to that of family networks, support diverse family structures, acknowledge the fluidity of caregiving, and measure the strengths and deficits at the family-level. Infrequently, programs described inclusion criteria for family participants in family-centered programs, but it was broad and inclusive of diverse relationships; it is important to continue to identify and support diverse family structures, recognizing care that is provided by friends, family members, neighbors, and colleagues, and allow for flexibility in the changing dynamic of who might be providing care as the disease progresses. Thus, future research may benefit from exploration of systems, networks, and communities that provide care. As the number of caregiving programs continues to grow, we suggest program developers and community organizations implementing these programs consider expanding beyond the view of a single, primary caregiver, and acknowledge the complexity in providing family care. With a broadening approach, we encourage researchers to explore the systems in which caregiving occurs with consideration to relationships, roles, and proximity to the PLWD, among the many nuances families face when caring for a PLWD. We also encourage researchers to look beyond perceived shortcomings (ie, the deficit view) by including positive outcomes of caregiving as a family, such as family functioning or flourishing to understand potential program benefits.

Additionally, to promote effective family-centered programs, identifying best practices for family engagement in family-centered programs and facilitator training and designing family-centered programs for dissemination are promising strategies. As discussed previously, it is important to learn how to comfortably engage families, and how these programs can be administered to include multi-family group and individual counseling approaches. Although family-centered programs were facilitated by trained clinicians, it would be helpful to identify aspects of therapeutic approaches such as structural ecosystems therapy, ⁴⁵ the adapted family work model, ⁴⁴ the FGC, which has been implemented in other decision-making processes,^99-101 best practices or lessons learned in implementing the NYUCI since 1987, ⁶⁹ and family counseling strategies from other chronic diseases to identify methods to support families living with a PLWD. Lastly, as the field of implementation science expands, it is imperative that program developers identify core components ³⁷ while also evaluating conceptual frameworks (eg, stress process model) ¹⁰² to increase scalability (including the use of technology) and cultural tailoring with fidelity to the original program to reach and include families who may not typically have access to programs.

Supplemental Material

Supplemental Material - Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs

Supplemental Material for Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs by Alexandra Malia Jackson, Kelly S. O’Sullivan, Megan Gilligan, and Raven H. Weaver in American Journal of Alzheimer's Disease & Other Dementias®.