Effectiveness of Supporting Informal Caregivers of People with Dementia: A Systematic Review of Randomized and Non-Randomized Controlled Trials

Abstract

Abstract.Background: Dementia is known as a major public health problem affecting both patients and caregivers, and placing a high financial strain upon society. In community-dwelling patients, it is important to support informal caregivers in order to help them sustain their demanding role. Previous reviews about effectiveness of such supporting strategies often included a small number of studies, focused only on particular supportive types, particular outcomes, or solely on caregivers. Objective: A general systematic review was conducted investigating effectiveness of different supportive strategies on at least the well-being of the caregiver or the care-recipient. Methods: A systematic literature search was conducted in Web of Science and PubMed. An adapted version of the Downs and Black (1998) checklist was used to assess methodological quality. A new classification was developed to group different types of caregiver support. Results: Fifty-three papers met the inclusion criteria. Although 87% of the interventions were to some extent effective, methods and findings were rather inconsistent. Psychoeducational interventions generally lead to positive outcomes for caregivers, and delay permanent institutionalization of care-recipients. Cognitive behavioral therapy decreases dysfunctional thoughts among caregivers. Occupational therapy decreases behavioral problems among patients and improves self-efficacy of caregivers. In general, those interventions tailored on individual level generate better outcomes. Comparative research on respite care was very rare. Conclusions: Despite methodological inconsistency, supporting caregivers appears to be an effective strategy often improving well-being of caregiver or care-recipient and resulting in additional benefits for society. However, there is a need for more research on the (cost)-effectiveness of respite care.

Living with a partner with dementia: a systematic review and thematic synthesis of spouses' lived experiences of changes in their everyday lives

“…Worldwide, a multisector approach that targets the needs and perspectives of persons with dementia and their relatives has been prioritised (Sundheds-og AEldreministeriet [The Ministry of Health], 2016; World health Organization, 2012). Interventions that are aimed at caregivers predominantly focus on education programmes, including the provision of coping and support strategies and selfmanagement support (Dam, De Vugt, Klinkenberg, Verhey, & Van Boxtel, 2016;Gilhooly et al, 2016;Huis in het Veld, Verkaik, Mistiaen, van Meijel, & Francke, 2015;Jensen, Agbata, Canavan, & McCarthy, 2015;Letts et al, 2011;Li, Cooper, Austin, & Livingston, 2013;Vandepitte et al, 2016).…”

Factors Associated with the Caregivers’ Desire to Institutionalize Persons with Dementia: A Cross-Sectional Study

“…Otherwise, identifying the risk factors of dementia CG’ DTI allows to develop effective strategies to delay institutionalization. The latter is preferable because it positively affects the health-related quality of life of the PWD (Vandepitte et al [9]) [10], and avoids rapid declines in health and eventually increased mortality [11]. Even more, staying at home is suspected to have financial benefits for the healthcare system as a result of avoided institutionalizations [12, 13].…”

Problem-solving in caregiver-counselling (PLiP Study): study protocol of a cluster randomized pragmatic trial

“…Caregiver burden or distress is common [2] and associated with female gender, low education, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and the lack of choice being a caregiver [3]. Interventions to support informal caregivers have been evaluated in diverse disease specific contexts like dementia or stroke [4, 5]. Major components of interventions are psychoeducation, supportive interventions, psychotherapy, respite/day-care, or training of the care recipient [6].…”

“…in dementia caregiver research are depressive symptoms and emotional distress, burden, self-efficacy and coping, and quality of life [7]. Most of the evaluated heterogeneous interventions for dementia caregivers were effective to some extent [4], with a robust corpus of intervention studies that demonstrates small but clinically and statistically significant benefits for families [8]. Despite the evaluation of more than 200 dementia caregiver interventions over the past three decades, only very few programs have been translated to delivery in service contexts [9].…”