Bibliographic information

GuidelineMental Health Gap Action Programme (‎mhGAP)‎ guideline for mental, neurological and substance use disorders, [‎3rd ed.]‎.
Year of Publication2023
Issuing InstitutionWorld Health Organization

Recommendation

New

Respite care should be considered for carers of people living with dementia

Recommended in favor

Conditional

Notes and Remarks

Remarks y For the purpose of this guideline, carers of people with dementia are family members, close friends and other informal carers. Carers may live together with the person with dementia or in separate households. Individual circumstances of the carer and the person with dementia need to be considered in the planning and provision of support to affected families. y The term “psychosocial intervention” is used loosely in research. Interventions are rarely manualized and often do not fall into mutually exclusive categories. Brief descriptions for recommended interventions are provided below (in alphabetical order).

  • “Mindfulness-based interventions” here is used as an umbrella term for mindfulness, meditation and yoga techniques as well as mindfulness-based cognitive therapy and mindfulness-based stress reduction (83).
  • “Multicomponent interventions” refer to interventions that use multiple approaches, such as counselling, support groups and respite, included in the same programme but without any one being the dominating component (83).
  • “Psychoeducation” refers to educational programmes with psychological or psychotherapeutic components that provide standardized information and focus on increasing carers’ knowledge of dementia and developing specific coping skills to deal with caregiving challenges; may be delivered individually or in group-settings if the therapeutic components are adapted for delivery in a structured psychoeducational format (83).
  • “Psychotherapy/counselling” as defined by Cheng et al., 2020 (83) refers to interventions that involve implementation of specified forms of individual or group therapy or counselling, typically behaviour therapy, cognitive therapy, conventional CBT but also newer theoretical orientations such as acceptance-commitment therapy. They are distinguished from psychoeducational programmes in that they are usually delivered by professional psychologists or therapists and place stronger emphasis on the development and utilization of the therapeutic relationship as part of the treatment process. y A range of other interventions have been considered as part of this update. No specific recommendations have been made as reported effects were domain specific, with overall low to very low certainty of evidence.
  • Training of the person with dementia (in which the carer participated) may be effective in increasing carer ability, knowledge, skills or mastery and reducing depressive symptoms in carers with low to very low certainty.
  • Remotely delivered interventions may have a small advantage over information-only control interventions but produce slightly greater drop-out rates. y There was insufficient evidence to recommend support groups and/or care coordination/case management as psychosocial interventions for carers of people living with dementia (83,86). However, these aspects may be included or combined with other interventions as may be the case with multicomponent interventions (see above). y Importantly, providing carers with interventions and support (e.g. carer education, carer skills training, social support, case management and multicomponent interventions) may also reduce symptoms in people living with dementia (90,91). y It is important for health workers to be aware of the high prevalence of depression and anxiety in carers of people with dementia (89) and assess and manage accordingly. y In view of lacking systematic/meta-analytic evidence on cost-effectiveness of carer interventions, primary research studies suggest that carer interventions may be cost-effective, not incurring higher healthcare utilization costs than treatment as usual (TAU) (92). Of note, carer support interventions are often peer-led and provided by civil society, therefore implemented outside the health system, yet contributing hugely to the care and support of affected families.

Implementation considerations y Lack of available services: A recent systematic review suggests that despite much research being undertaken in the area of carer interventions, implementation readiness remains low and existing work has not been delivered in terms of accessible solutions to care (94). This results in often lacking support services for dementia carers, especially in LMICs and rural or remote areas (95,96). y Barriers and enablers of service delivery: Carer interventions are largely deemed feasible to implement and likely most effective when provided in groups (97). However, according to a scoping review by Bayly et al. (2020), common barriers to service utilization include: low awareness of available services, cost of service, transportation challenges, need for respite, difficulty getting the person with dementia to services, values and beliefs (e.g. reluctance to reach out for help, belief that family should provide care), stigma around dementia and the use of support services, service not meeting a need/incompatible (98). In addition, carers report limited time as a major barrier for accessing training and support (99). y Consider individual circumstances and setting: Individual factors and circumstances such as gender, relationship to and cohabiting with the person with dementia, and whether caregiving responsibilities are shared with others can affect depression and anxiety symptoms and their likelihood of seeking help and accessing services. y Need for cultural adaptation: Based on a systematic review by Akarsu et al. (2019), basic levels of cultural adaptation of carer interventions (e.g. only translating generic materials or having bilingual and bicultural staff) appear less effective than interventions that are developed with the target ethnic minority or cultural group’s preferred method of engagement in mind (100). y Costs of interventions: According to Hu et al., 2021, the costs and effects of interventions supporting informal carers of people with dementia might be affected by the inclusion of different intervention components, specific carer characteristics, and the follow-up periods considered (101). y Modes of delivery of interventions: Different delivery modes of carer interventions, including digital or remotely delivered interventions have been reported to be effective. For example: CBT delivered via internet, telephone or individual sessions were equally effective in reducing depressive symptoms in carers (102); multicomponent carer eHealth interventions delivered via the internet, telephone and combined technologies generally produced positive (albeit varying) effects regarding depression, anxiety, caregiver burden, stress, self-efficacy, knowledge and skill improvements (103). Additionally, carers of people with dementia found internet-based interventions mostly to be effective, efficient, and satisfactory (104). App-based mobile interventions for dementia carers resulted in positive effects on carer competency (SMD = 0.434; 95% CI: 0.093 to 0.775), and quality of life (SMD =

  • 0.794; 95% CI: 0.310 to 1.278), while other outcomes were non-significant: caregiver burden (SMD =
  • 0.315; 95% CI: -0.681 to 0.052), depression (SMD =
  • 0.236; 95% CI: -0.517 to 0.046) and stress (SMD =
  • 0.295; 95% CI: -0.708 to 0.118) (105).