Table 1 Summary of included studies
Study ID | First author, Year, Location | Main focus | Method | Participant group(s) | Participant gender | Participant age (mean) | Participant ethnicity | Participant mental health information | PLWD’s dementia diagnosis | Intervention approach & modality | Quality Rating descriptor |
|---|---|---|---|---|---|---|---|---|---|---|---|
1 | Contreras (2022), UK [13] | Carers’ views and acceptability of internet-delivered, therapist-guided, self-help ACT for family carers of PLWD (iACT4 CARERS) | Qualitative; Semi-structured interviews. Thematic Analysis | 23 unpaid primary carers: Spouses (n = 12), Adult children (n = 10), Sibling (n = 1) | Female (n = 20), Male (n = 3) | 62 | Not reported | Mild- moderate depression or anxiety, as indicated by GAD-7 or PHQ-9 scores | AD (n = 6), VD (n = 3), DwLB (n = 1), FTD (n = 1); Mixed dementia (n = 9), Other (n = 3) | Internet-delivered, therapist-guided, self-help ACT for carers of PLWD (iACT4 CARERS). 8 individual online sessions, and optional 3 online peer-support groups | High |
2 | Contreras (2021), UK [31] | Therapists’ views and acceptability of providing internet-delivered, therapist-guided, self-help ACT for family carers of PLWD (iACT4 CARERS) | Qualitative; Semi-structured interviews. Thematic Analysis | 8 novice therapists | Female (75%), Male (25%) (percentages reported only) | Not reported | Not reported | Not reported | Not reported | Internet-delivered, therapist-guided, self-help ACT (iACT4 CARERS) 8 individual online sessions, and optional 3 online peer-support groups | High |
3 | Sørensen (2008), Denmark [34] | Participants’ experienced outcome of an intensive structured psychosocial intervention programme for home-living patients with mild AD and their spousal carers | Qualitative; Semi-structured interviews Grounded theory approach (Dellve, Abramsson, Trulsson, & Hallberg, 2002; (Crabtree & Miller, 1999) | Partner carers (n = 10), PLWD (n = 10) | PLWD: Female (n = 5), Male (n = 5) Carers: Female (n = 5), Male (n = 5) | Carers: 73.4, PLWD: 66.7 | Not reported | Not reported | PLWD described as having ‘Mild AD’ | Multicomponent 6-month intervention, which included 5 main components: 1) Tailored counselling for the individuals and the family, 2) Education course for groups of PLWD, 3) Education course for carers, 4) Outreach telephone counselling, and 5) Log book kept by PLWD and carers separately | High |
4 | Tahsin (2021), Canada [35] | Carers’ experience of a single mindfulness session and the feasibility of mindfulness to be integrated into their daily lives | Qualitative; Semi-structured interviews. Thematic analysis | 6 carers (relationship to PLWD not reported) | Female (n = 5), Male (n = 1) | Range: 60–69 (mean not reported) | Not reported | Not reported | Not reported | Single 15-min group mindfulness session | High |
5 | Elvish (2014), UK [36] | Carers’ experiences of receiving counselling/psychotherapy | Qualitative; Semi-structured interviews. “Narrative methodology (Williams & Keady, 2008) and the thematic approach of ‘holistic-content’ analysis (Lieblich, Tuval-Mashiach, & Zilber, 1998) | 6 carers: Spouses (n = 4), Adult children (n = 2) At the time of interview, five participants were actively undertaking therapy, and one participant had recently completed their sessions | Female (n = 5), Male (n = 1) | Range: 55–80 (mean not reported) | All White/British | Not reported | Not reported | Individual counselling/psychotherapy, eclectic approach including humanistic, integrative, person-centred, non-directive, personal construct, acceptance and commitment, cognitive- behavioural, schema, and psycho-educational approaches | High |
6 | Brooks (2022), Australia [37] | Explored long-term care placement transitional support needs and preferences of spousal dementia carers (from spousal carer and long-term care facility staff perspectives), to inform subsequent support and intervention development | Qualitative; Semi-structured interviews or small group discussions held separately with carers and care facility staff. Framework approach (Ritchie & Spencer, 1994) | Spousal carers (n = 9), Care facility staff (n = 11) Psychological support had been sought by some spouses experiencing high levels of grief or depression, from counsellors or psychologists | Carers: Female (n = 8), Male (n = 1) | Range 60 s-80 s (mean not reported) | Caucasian, Australian or British by birth. No other information reported | Not reported | Not reported | Not specified, as reported on the transitional support needs of participants | Medium |
7 | Griffiths (2020), UK [38] | Perspectives of PLWD and their family carers on a relational counselling intervention delivered through a third sector organisation within England | Qualitative; Semi-structured interviews. Framework analysis | 23 Carers: Spouses (n = 11), Adult children (n = 12) PLWD (n = 6) This included three ‘dyads’, whereby both the person with dementia and their respective caregiver attended sessions | Carers: Female (n = 19), Male (n = 4) PLWD: Female (n = 3), Male (n = 3) | Carers: Not reported, PLWD: 81 | Carers: White British (n = 22); Black British (n = 1) PLWD: White British (n = 4); White European (n = 2) | Not reported | AD (n = 4), VD (n = 1), Mixed dementia (n = 1) | 12-week relational counselling intervention. Most participants attended sessions individually, with three attending as ‘dyads’ (PLWD and their carer attended together) | Medium |
8 | Johannessen (2015), Norway [39] | Family carers'experiences of attending a multicomponent psychosocial intervention program for carers and PLWD, and participants’ advice on how to develop the intervention program | Qualitative; Semi-structured interviews. Content analysis (Corbin & Strauss, 2008) | 20 family carers: Spouses (n = 13), Adult children (n = 7) | Female (n = 15), Male (n = 5) | 64.5 | Not reported | Not reported | Not reported | Multicomponent psychosocial intervention which includes individual counselling, group meetings, cognitive techniques such as structured problem solving, and education | Medium |
9 | Kazmer (2018), United States [40] | Experiences of dementia family carers who participated in an integrative, cognitive-behavioural and spiritual counselling intervention, and also experiences of FCNs who delivered the intervention. Including their views on the benefits and drawbacks of the intervention | Qualitative component reported only; Semi-structured interviews “An inductive, iterative process of generating coding that was collaborative with the research team” (Ahuvia, 2001;Bradley, Curry, & Devers, 2007; Meyer & Avery, 2009; Steinke, 2004) | 7 carers (relationship to PLWD not specified) | Female (n = 6), Male (n = 1) | Not reported | Not reported | Not reported | Scored 10 or more on the PHQ-9 | Cognitive-behavioural and spiritual counselling (CBSC) intervention, delivered by FCNs who had a subspecialty in faith-based service provision. The intervention included 12 1-h individual sessions delivered biweekly in carers’ homes. Counselling focused on identified problems of the carers, and the most frequently used CBT elements were relaxation training, cognitive reframing, increasing assertiveness, and building pleasant daily Spiritual counselling focused on the use of religious coping strategies, such as prayer, meditation, positive affirmation, and communal support | Medium |
10 | Lee (2022), United States [41] | Experiences of family carers of PLWD in receiving a telephone support intervention for diverse family carers of PLWD during the COVID-19 pandemic | Qualitative; Data were collected through detailed call logs by the Research Assistants Thematic Analysis | 23 family carers: Spouses (n = 11), Adult children (n = 9) | Female (n = 20), Male (n = 3) | 60.2 | Hispanic (n = 8), Non-Hispanic White (n = 7), Korean (n = 5), Vietnamese (n = 3) | AD (n = 17), VD (n = 2), DwLB (n = 1), Unsure (n = 3) | Not reported | Four-week individual telephone support intervention which included psychoeducation, stress management and compassionate listening, described as being “culturally and linguistically appropriate” | Medium |
11 | Berk (2019), Netherlands [42] | PLWD and their partners’ views of a mindfulness- based intervention | Mixed methods: Semi-structured interviews. Deductive content analysis | Partner carers (n = 7), PLWD (n = 7) | Carers: Female (n = 5), Male (n = 2) PLWD: Female (n = 2), Male (n = 5) | Carers: 70.75 PLWD: 71.46 | Not reported | AD (n = 4), VD (n = 2), FTD (n = 1) | Not reported | Attention Training for PLWD and their carers (TANDEM), which consisted of eight weekly group sessions of 2.5 h each, a 4 h silent day and daily homework assignments of 45 min per day. A range mindfulness of exercises were taught and psycho education about stress and communication | Medium |
12 | Yang (2023), United State [43] | Experiences and perceived benefits of family dementia carers who underwent MIT | Qualitative; Semi-structured interviews. A “collaborative approach (Richards & Hemphill, 2018)”, including a within case analysis and a cross case theme analysis (Ayres et al., 2003) | 11 family carers: Spouses (n = 4), Adult children (n = 7) | Female (n = 9), Male (n = 2) | Not reported. “Six were over the age of 65, while the other five were between 38 and 65” | Caucasian (n = 7), African American (n = 2), Hispanic (n = 2) | Not specified | Scored 10 or more on the PHQ-9 | 4-week MIT program, which included group sessions of mindful stretching, breathing exercises, group discussion, and guided imagery | Medium |
13 | Glueckauf (2012), United States [33] | Explored carers’ experiences of a telephone-based CBT for African American dementia carers with depression | Mixed-methods; Semi- structured interview. Grounded theory approach, open-coding procedure (Charmaz, 2006; Strauss & Corbin, 1998) | 11 carers (relationship to PLWD not specified) | Female (n = 10), Male (n = 1) | 58.09 | All African American | AD (n = 5), DwLB (n = 2), VD (n = 2), Dementia of unknown etiology (n = 2) | Mean PHQ-9 score within the moderate range of depression (M = 13.0, SD = 2.72) | Telephone-Based CBT. The intervention program consisted of a total of 12, 1-h, weekly sessions, 7 group and 5 individual carer goal-setting and implementation sessions | Medium |
14 | Vernooij-Dassen (2010), United States [44] | Explore the provision of the New York University Caregiver Intervention (NYUCI), family-centred counselling, to enhance its implementation | Qualitative; Group interviews. Grounded theory approach | 8 counsellors who provided the intervention | All female | Ranged from “mid- 60 s to 95 years” (mean not reported) | Not reported | Alzheimer’s only | Not reported | The New York University Caregiver Intervention (NYUCI) expands the intervention to all participating family members and focuses on the family context and includes individual and family counselling and support groups | Medium |
15 | Gaugler (2018), United States [45] | A process evaluation of the New York University Caregiver Intervention-Adult Child (NYUCI-AC) to describe its delivery and determine which of its components were associated with key outcomes (caregiver stress and well-being; care recipient residential care admission) | Mixed methods; Survey, qualitative component included one open-ended feedback question. Thematic Analysis | 54 Adult children carers participated in the overall study, and only 25 participated in the qualitative component | Female: 88.7%. (percentage reported only) | 51.23 | Caucasian: 94.4% (percentage reported only) | Alzheimer’s only | Caregiver Perceived Stress Scale: M = 15.07, Geriatric Depression Scale: M = 6.11, Quality of Life: Cantril Ladder: M = 74.63 | Multi-component psychosocial intervention (the NYUCI) and includes individual and family counselling and support groups | Low |
16 | Gräßel (2010), Germany [46] | Predictors for utilisation and expected quality of counselling from a family carer’s perspective. Specifically asked which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of caregiver counselling; and what are the views of caregivers about the quality of caregiver counselling | Mixed-methods; survey, qualitative component included one open question Content analysis (Morgan, 1993) | 404 carers: Spousal (43.8%), Adult children: (43.9%), Others (7.3%) (percentages reported only) 155 of the family carers (38.4%) were “users of counselling” | Female: 73.3% (percentage reported only) | 61.3 | Not reported | Not specified but appears to be AD only | Not reported | Not specified, as reported on counselling needs of participants | Low |
17 | Glueckauf (2022), United States [47] | An initial evaluation of the quantitative and qualitative outcomes of the African American Alzheimer’s Caregiver Training and Support Project 2 (ACTS2). Qualitative objectives included examining carers’ perceptions of the effectiveness of in-session training activities, quality of relationships among group participants and their facilitator, and appraisals of spiritual elements of the program | Mixed-methods; Qualitative component was semi-structured interviews Inductive and Grounded theory approach with open coding (Charmaz, 2006) | 9 carers: Adult children (n = 6), Spouse (n = 1), Adult grandchild (n = 1), Niece (n = 1) | Female (n = 8), Male (n = 1) | 56.0 | All African American | All AD | Scored 10 or above on the PHQ-9 | ACTS2 was lay pastoral care facilitator-led (trained lay faith community worker-led), faith-integrated telephone CBI for African American dementia carers with moderate depression. The 12-week training included 7 skills-building groups and 5 individual problem solving sessions; and integration of spiritual elements such as prayer | Low |
18 | Hoppes (2012), United States [48] | The effects of a brief course of mindfulness training on the well-being of individuals caring for family members with dementia | Mixed-methods; qualitative component consisted of interviews. Thematic analysis using grounded theory’s open coding stage (Charmaz, 2006; Glaser & Strauss, 1968; Strauss & Corbin, 1998) | 11 family carers: Spouses (n = 7), Adult children (n = 4) | Female (n = 10), Male (n = 1) | 63.8 | All Caucasian | Not reported | Not reported | 4 group sessions (1-h per session, once a week for 4 consecutive weeks) of mindfulness training, based on MBSR | Low |
19 | Kazmer (2013), United States [32] | Used qualitative interview data from the African-American Alzheimer's Caregiver Training and Support (ACTS) project (Glueckauf et al., 2012) to understand information problems, settings, and uses of dementia carers, over the course of CBT for depression | Secondary qualitative data analysis; Interview data from semi-structured interviews. Open coding approach (Strauss & Corbin, 1998) | 16 carers | Not reported | Not reported | All African American | Not reported | All AD | The intervention focused on CBT skills and enhancing social support. 12, 1-h, weekly sessions, 7 group and 5 individual goal-setting and implementation sessions | Low |
20 | Kor (2019), Hong Kong China [49] | Feasibility and preliminary effects of a modified MBCT for family carers of PLWD | Mixed-methods; qualitative component involved a focus group (semi-structured interview). Content analysis | 8 carers participated in the focus groups: Adult children (n = 5), Spouses (n = 3) | In overall study: Female (n = 30), Male (n = 6) (breakdown not reported for focus group participants only) | 56.9 | Not reported | Not reported | Not reported | A group-based, 10-week, 7-session modified MBCT program included mindfulness activities (e.g. mindful walking, body scanning, mindful eating), psychoeducation on caregiving, and group sharing | Low |
21 | Koufacos (2023), United States [50] | Results of a VHA project, whereby carers received individual assessment and counselling focused on stress-reduction | Mixed-methods; survey, qualitative component was open-ended questions Content analysis | 24 out of 30 carer participants completed the survey (relationship to PLWD not reported) | Females: 92% (percentage reported only) | Over the age of 65: 75% (mean not reported) | Not reported | Not reported | Not reported | A VHA project in which a social worker trained in palliative care, taught stress reduction to carers through individual counselling and virtual groups | Low |
22 | Berwig (2020), Germany [51] | Evaluated the feasibility of Marte Meo® counselling with people with bvFTD and their primary carers | Mixed-methods; Qualitative component involved a telephone interview. Content analysis (Kuckartz, 2012), with inductive and deductive approaches | 5 dyads (primary carer and PLWD): Spousal carers (n = 4), Adult child carers (n = 1) | Carers: All female PLWD: Female (n = 1), Male (n = 4) | Carers: 62.2 PLWD: 60 | Not reported | All bvFTD | Not reported | Marte Meo® counselling is a video-based intervention for PLWD and carer dyads, that aims to maintain or improve the quality of dyadic relationships, and focuses on dialogue and interactions. The method uses video feedback as an indirect intervention, and the focus of MM counselling is the analysis and (co-)design of dialogues that involve communication and interaction processes | Low |
23 | Brännström (2000), Sweden [52] | Experiences of counselling groups for spouses of elderly PLWD | Qualitative; Semi-structured interviews. Grounded theory approach “followed closely” (Strauss and Corbin, 1990) | 18 spousal carers | Female (n = 10), Male (n = 8) | Range of 55–76 yrs (mean not reported) | Not reported | Not reported | Not reported | Counselling groups that includes education about dementia and offers carers emotional and practical support for their daily living related to, for example, dementia-related behaviour, dementia-related problems of daily life such as household tasks, care giving and care arrangements | Low |