What do family caregivers of people with dementia need? A mixed‐method systematic review

Abstract

Caring for people with dementia is a major challenge for relatives and society worldwide. Understanding the family caregivers' needs is crucial to promote their caregiving role during the disease trajectory. The aim of this mixed-method systematic review was to identify and synthetise the existing literature on the needs of family caregivers of people with dementia at home. PubMed, CINAHL, Cochrane Database of Systematic Reviews and PsycINFO databases were systematically explored to find quantitative, qualitative and mixed-method studies published between 2009 and 2019. A total of 1,196 citations were retrieved and 34 studies were included in the review. The variety of interrelated needs emerged from studies has been summarised in four themes: (a) Being supported, (b) Receiving accessible and personalised information, (c) Being trained and educated to care for their beloved with dementia and (d) Finding a balance. Care-giving for individuals with dementia is an ever-changing process characterised by continuous adjustments to their needs. The majority of a family caregivers' needs are oriented towards receiving support, help in offering daily care and finding a balance between the care-giving role and their own personal needs. For family caregivers, receiving information is a priority to improve their knowledge and to develop coping abilities, care skills and strategies aimed at promoting a balance between care assistance duties and their own needs. They also need social, psychological and emotional support and access to flexible, tailored and timely formal care. Further studies are recommended to detect changes in family caregivers' needs throughout the disease progression in order to tailor formal care offered by social and healthcare services.

Behavioral and Psychological Effects of Coronavirus Disease-19 Quarantine in Patients With Dementia

“…Increased concern for patient health and increased familial conflicts were also reported. Presence of housemates reduced the risk of depression and conflicts thus indicating that caregiver burden may be mitigated by contrasting loneliness and supporting needs of caring with a network of helps (52).…”

Exploring the experiences of living with Lewy body dementia: An integrative review

“…However, given the disabling effect of neuropsychiatric symptoms, support and information should be tailored for those with Lewy body dementia (Connors et al, 2018; Rigby et al, 2019). Greater understanding of formal services and knowledge of the disease progression can reduce carers’ feeling of frustration and isolation, and result in people feeling better prepared (Bressan et al, 2020). However, to address the complex physical, cognitive and psychosocial needs, those with Lewy body dementia may require lifelong tailored support and services (Capouch et al, 2018).…”

Experiences of family caregivers regarding a community‐based care‐ and case‐management intervention. A qualitative study

“…Moreover, the role and responsibilities of family caregivers may affect them physically and emotionally, thus increasing the possibility of becoming an "invisible second patient" (Bressan et al, 2020).…”