What would most help improve the quality of life of older family carers of people with dementia? A qualitative study of carers’ views

Abstract

Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia - "What would most help improve your quality of life as a carer?" Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers' groups, health services and via online forums. A thematic approach was used to analyse the carers' comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

“…Increasing caring responsibilities and time commitments can lead to family carers experiencing a 'shrinking world', in which maintaining access to social and physical realms beyond the home becomes difficult (Davies et al, 2019;Ward et al, 2018). Decreased financial and economic well-being is another common consequence associated with caring for a person with dementia (Oliveira et al, 2020). Out-of-pocket care-related expenses account for 11% of annual household income for families of dependent people without dementia in the last five years of their life.…”

Qualidade de vida de idoso cuidador de idoso na família: revisão sistemática

“…De forma geral, a presente revisão evidenciou a escassez de publicações primárias relacionada à qualidade de vida do cuidador familiar idoso frente ao processo de cuidar de um idoso doente. DQol-OC -Dementia Quality of Life Scale for Older Family Carers, utilizado para avaliação da QV de cuidadores familiares idosos de pessoas com demência (Oliveira et al, 2017a(Oliveira et al, , 2017b(Oliveira et al, , 2018; Q-LES-Q-SF -Quality of Life Enjoyment and Satisfaction Questionnaire Short Form, avaliação das percepções de prazer e de satisfação (Bormann et al, 2009), e SF-12 -Short Form Health Survey, que considera 12 itens com duas dimensões: saúde física (PCS12) e saúde mental (MCS12) (Ekwall et al, 2004;Fagerström et al, 2020). O instrumento DQol-OC, a partir das duas questões abertas, possibilitou aos cuidadores a oportunidade de expressar os aspectos importantes e não abordados no questionário e geralmente, estes não estão disponíveis na maioria das outras escalas de QV (Oliveira et al, 2017a), permitindo a manifestação de colocações subjetivas e dos conteúdos ocultos nas falas dos participantes.…”

“…Os estudos evidenciaram uma variedade de fenômenos de interesse e de temas adotados quanto ao termo cuidador, seja ele: familiar (Canam & Acorn, 1999;Díaz-Veiga & Trocóniz, 2005;Bormann et al, 2009;Oliveira et al, 2017aOliveira et al, , 2017b, idoso (Rosas & Neri, 2019), de idoso (Oliveira et al, 2018), familiar idoso (Oliveira et al, 2017a(Oliveira et al, , 2017b(Oliveira et al, , 2018Fagerström et al, 2020) e informal (Ekwall et al, 2004;Flesch et al, 2019).…”

“…De acordo com os artigos incluídos, os cuidados aos idosos, enfatizam os problemas de saúde, principalmente os relacionados à demência (Bormann et al, 2009;Oliveira, 2017aOliveira, , 2017bOliveira, , 2018. Na relação cuidador idoso e o cuidado, Flesch et al (2019) avaliaram a associação entre a dupla vulnerabilidade e a qualidade de vida e concluíram que a sobrecarga foi a variável de maior impacto na determinação da qualidade de vida.…”

Dementia Family Carers’ Quality of Life and Their Perceptions About Care-receivers’ Dementia Symptoms: The Role of Resilience

“…Recent studies (Daley et al, 2019; Frias et al, 2020; Hvidsten et al, 2020; Vun et al, 2020), systematic reviews (Farina et al, 2017; Oliveira et al, 2020; Pereira & Soares, 2015) and a meta-analysis (Contreras et al, 2020) have identified a number of factors that are associated with CGs’ QoL. These included CG’s variables , such as age, gender, physical and mental health problems, and burden, and the care-receiver’s characteristics , such as dementia symptoms as perceived by the CG.…”