Arlene Astell

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of ‘decision-making’ was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified ‘Guidance for Researchers To Support Caregivers’. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

Healthcare providers caring for people living with dementia may experience moral distress when faced with ethically challenging situations, such as the inability to provide care that is consistent with their values. The COVID-19 pandemic produced conditions in long-term care homes (hereafter referred to as ‘care homes’) that could potentially contribute to moral distress. We conducted an online survey to examine changes in moral distress during the pandemic, its contributing factors and correlates, and its impact on the well-being of care home staff. Survey participants (n = 227) working in care homes across Ontario, Canada were recruited through provincial care home organizations. Using a Bayesian approach, we examined the association between moral distress and staff demographics and roles, and characteristics of the long-term care home. We performed a qualitative analysis of the survey’s free-text responses. More than 80% of care home healthcare providers working with people with dementia reported an increase in moral distress since the start of the pandemic. There was no difference in the severity of distress by age, sex, role, or years of experience. The most common factors associated with moral distress were lack of activities and family visits, insufficient staffing and high turnover, and having to follow policies and procedures that were perceived to harm residents with dementia. At least two-thirds of respondents reported feelings of physical exhaustion, sadness/anxiety, frustration, powerlessness, and guilt due to the moral distress experienced during the pandemic. Respondents working in not-for-profit or municipal homes reported less sadness/anxiety and feelings of not wanting to go to work than those in for-profit homes. Front-line staff were more likely to report not wanting to work than those in management or administrative positions. Overall, we found that increases in moral distress during the pandemic negatively affected the well-being of healthcare providers in care homes, with preliminary evidence suggesting that individual and systemic factors may intensify the negative effect.