Most people with dementia (PwD) are cared for by unpaid family carers, many of whom must balance caring with paid work. This regularly entails dealing with care-related emergencies (CRE). This study aims to explore the impact of carers’ autonomy at work regarding breaks, schedule, and place on their ability to manage CRE, and use technology to that end. We conducted interviews with 16 working carers of PwD in Scotland. Data were analysed thematically to identify key themes. Autonomy at work appeared on a spectrum from no to complete autonomy. Carers’ position on this spectrum was often dynamic and determined by the nature of their work, their workplace culture and regulations, and their line managers’ support – or clients in the case of self-employed carers. Break autonomy allowed carers to use technology to be notified of and delegate the CRE response. Schedule autonomy allowed for an in-person response to CRE. Place autonomy allowed carers to work and care simultaneously, which enabled them to manage CRE immediately but presented them with additional challenges. Distance between workplace and PwD’s residence impacted carers’ ability to manage CRE, despite having complete autonomy. Implications for healthcare professionals, service providers, employers, policymakers, and technology developers are presented.
Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
Challenges in keeping healthcare affordable make informal care increasingly important. It is essential to understand the context in which people provide informal care and gain insight into their wishes with regard to the division of care responsibilities. A total of 37 interviews and eight focus groups were conducted to investigate how Dutch carers’ care attitudes are shaped. Results show that carers’ intersecting social positions, such as gender, migration background, socio-economic status and stage of life, largely influence their care attitudes. Carers want to provide care but experience challenges in doing so. They request a government that takes the lead and facilitates cooperation with professionals.
