Dementia trials, outcomes, and outcome measurement instruments for people living with dementia and family carers – considerations on how to improve the “gold standard”

Harding, Andrew; Reilly, Siobhán

doi:10.1017/s1041610220003749

Cited by 2 publications

(1 citation statement)

References 21 publications

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“…Research supports this notion and reveals that the effectiveness of psychosocial interventions is limited [ 52 ]. Critics of research on interventions state that the chosen outcomes of interventions are highly variable and not based on what individuals living with dementia value in their lives [ 53 , 54 ]. In addition, in intervention research the concept of everyday life is often ‘bracketed’ because of a focus on different aspects such as behaviour problems or care burdens [ 52 ].…”

Section: Introductionmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

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