Background: Refusals of care in dementia are common and can create difficult situations for caregivers. Little is known about the best way to manage them. Aim: To identify possible strategies and interventions to reduce or cope with refusals of care in dementia, and determine the evidence for these.
Methods: We searched MEDLINE, CINAHL, PsycINFO, EMBASE, AMED and Cochrane Central Register of Controlled Trials databases August 2018, with an updated search August 2019. An additional lateral search was conducted. Two researchers screened all records for potential eligibility and quality. Narrative synthesis was used to combine the findings.
Results: Out of the 5953 records identified, 36 articles, relating to 30 studies, met the eligibility criteria. Twenty-eight of the studies (93%) were set in long-term care facilities, one in a psychogeriatric unit and one with community dwelling people. Fourteen out of the 30 studies focussed on general or mixed care activities, 8 bathing, 4 mealtimes, 2 medication administration, and 2 mouth care. Strategies or interventions identified as potential ways to reduce refusals included: music interventions, interaction and communication style, caregiver approach, bathing techniques, abilities focussed approaches, distraction approaches, and video-simulated presence of a loved one. There was most evidence for music interventions and different bathing techniques, and interaction and communication styles were associated with reduced refusals. There was no evidence that slow-stroke massage (mixed care activities) or aromatherapy (mixed care activities and medication administration) reduced refusals of care.
Conclusions: Some non-pharmacological interventions can reduce, but not eliminate, refusals of care, such as playing music during care or communicating positively without using elderspeak. More research evidence is needed to underpin strategies identified as encouraging such as Namaste Care or distraction techniques. Future research should address gaps identified such as, the absence of research examining non-pharmacological interventions for refusals of care in hospital settings and in community settings with home-care workers, and the limited research involving family carers. Tweetable abstract: Playing music during care and offering different bathing options can reduce refusal behaviours in dementia, whereas elderspeak and negative communication are associated with refusals.
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