RESUMO
Background: Pain management for people with dementia is challenging. There is limited understanding on the experiences of pain management from people with dementia, but also from those who support them. This study synthesised the qualitative evidence to explore the perspectives of people with dementia, their family, friends, carers and healthcare professionals to pain management. Methods: A systematic literature review was undertaken of published and unpublished literature databases (to 01 November 2021). All qualitative research studies reporting the perspectives of people with dementia, their family, friends, carers and healthcare professionals to managing pain were included. Eligible studies were appraised using the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool. A meta-ethnography analysis approach was adopted, with findings assessed against the GRADE-CERQual framework. Results: Of the 3994 citations screened, 33 studies were eligible. Seven themes were identified from the data. There was moderate evidence from six studies indicating inequity of pain management for people with dementia. There was moderate evidence from 22 studies regarding anxieties on cascading pain information. There was moderate evidence from nine studies that familiarisation of the person with pain, their preferences, routines and behaviours were key factors to better pain management. Consistently, carers and healthcare professionals had a low opinion of the management of pain for people with dementia, with tensions over the 'best' treatment options to offer. This was associated with poor training and understanding on how pain 'should' be managed. Conclusion: The findings highlight the challenges faced by people with dementia and pain, and those who support them. Improvements in education for people who support these individuals would be valuable across health and social care pathways. Supporting family members and relatives on pain experiences and treatment options could improve awareness to improve quality of life for people with dementia and pain and those who support them.
RESUMO
Informal caregivers provide vital support for older adults living in the community with chronic illnesses. The purpose of this study was to assess the psychosocial status of informal caregivers of community-dwelling adults over an eight-year period. Informal caregivers of adult care-recipients were identified from Wave 1 of the English Longitudinal Study of Ageing (ELSA) cohort. Multivariate regression analysis models were constructed to assess the association between participant's psychosocial characteristics and informal caregiving. Multilevel modelling explored the psychosocial changes between caregivers and non-caregivers over eight years. 1375 informal caregivers and 2750 age-matched non-caregivers were analyzed. Self-reported loneliness (Odd Ratio (OR): 0.26; 95% confidence intervals (CI): 0.01-0.51) and relationship status (OR: 0.36; 95% CI: 0.16-0.46) were independently associated with caregiving. Caregivers were more socially isolated with less holidaying abroad (OR: 0.51; 95% CI: 0.35-0.66), attendance to church (OR: 0.30; 95% CI: 0.11-0.49), or charity groups (OR: 0.35; 95% CI: 0.14-0.55). On multilevel analysis, over time (eight-years), caregivers reported greater loneliness (p < 0.01), change in relationship status (p = 0.01) and reduced control, autonomy, and pleasure (p ≤ 0.01) compared to non-caregivers. Given the deleterious effects caregiving can place on health and wellbeing, further interventions are required to improve these psychosocial factors.