Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer’s Disease and Related Dementias: A Qualitative Study

Many older adults with diabetes (DM) have co-occurring Alzheimer’s Disease (AD) and AD-Related Dementias (ADRD). Complex treatment plans may impose treatment burden for caregivers responsible for day-to-day self-management. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for people with DM-AD/ADRD. Caregivers ( n = 33) of patients with DM-AD/ADRD participated in semi-structured interviews about their caregiver role and perceptions of treatment burden of DM-AD/ADRD management. Qualitative data were analyzed using content analysis (ATLAS.ti). Caregivers reported high levels of burden related to complex treatment/self-management for patients with DM-AD/ADRD that varied day-to-day with the patient’s cognitive status. Four themes were: (1) trajectory of treatment burden; (2) navigating multiple healthcare providers/systems of care; (3) caregiver role conflict; and (4) emotional burden. Interventions to reduce caregiver treatment burden should include activating supportive services, education, and care coordination especially, if patient treatment increases in complexity over time.

Remarriage of elderly Widows: Widows’ attitude and fear regarding new romantic relationships

This study examines the fears, after the death of their partners, which elderly widows experience regarding a new romantic relationship, in other words the decision whether to stay single or remarry. Participants in the study were widows who provided information about their attitude and fears regarding remarriage. The study operationalizes the theory of marriage in order to understand the factors that influenced their decisions whether to remain single or opt for re-marriage. The study is anchored in a phenomenological approach. Semi-structured interviews with elderly widows who were not currently married were employed to collect data. The data were analyzed using thematic content analysis that defined the experiences and perceptions of elderly widows. The findings were categorized into five main themes: fear of being ostracised by in-laws and family pressure, poor previous marriages, the caregiver role, inheritance rights, and not being able to find a suitable partner. Their involvement in a remarried relationship is perceived as taboo by both family and family-in-law. Furthermore, they see a remarriage as compromising their inheritances rights and are aware of the difficulty of finding a partner who matches their preference.

Aspects of Grit Among Dementia Family Caregivers

Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

Experiences of African American Dementia Caregivers During the COVID-19 Pandemic

African American caregivers are often confronted with the complexities of caregiving through the lens of race and associated health disparities. The COVID-19 pandemic has both exacerbated the systemic disparities and deeply rooted inequities experienced by African Americans and laid bare their effects on the community of caregivers. The purpose of this project was to explore the experiences of African American dementia caregivers during the COVID-19 pandemic. Nineteen African American caregivers of persons living with dementia were recruited by primary investigators and community partners with purposeful sampling techniques to participate in semi-structured focus groups that were held April 2021. Four overarching themes were constructed during thematic analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges in fulfilling the caregiver role. Caregivers expressed that they became socially isolated from family and friends, which led to them becoming depressed and mentally strained. Several caregivers felt they could not carry out their caregiver duties due to the constraints surrounding the pandemic. The varying levels of interaction with and the comfort level of physicians utilizing telehealth led to caregivers having mixed reviews on the popularized service. The results of this study will be used to culturally adapt caregiving education courses and programs promoting mastery and competency during a pandemic. In preparations for future public health crises, healthcare professionals will be able to use the results of this study to address the specific needs and improve the experiences of African American dementia caregivers.

Family Caregivers as Advocates

This presentation discusses the growing influence of family caregiver advocacy and its prospects for impacting policy under the Biden administration, at both the federal and states levels. In particular, it will describe the National Alliance for Caregiving’s 50-state unified strategy for establishing the caregiver support infrastructure that is needed to coordinate efforts and to support caregivers across the nation and the lifespan. Historically, family caregivers have had difficulty acting as effective advocates, given the multiple roles they often play and their widely divergent interests, based on the varying needs of their care recipient and their divergent life circumstances. However, the Biden administration has indicated receptivity to caregiver issues, and the public has become increasingly aware of the caregiver role (in part, due to the pandemic), resulting in improved prospects for policy action at both the state and federal levels. This presentation reviews recent developments and discusses strategies for moving forward.

Hear to Care: The role of caregivers in the spiritual care of residents in New Zealand Rest Homes

<p>This thesis argues that caregivers are exposed to the spiritual needs of rest home residents much more than might have previously been recognised, and that they are a more important part of the matrix of spiritual care than has been understood or acknowledged. By employing a qualitative research methodology, staff, residents and management at two rest homes in the greater Wellington region were interviewed to address the question: to what extent and in what ways is spiritual care a part of the caregiver role in New Zealand rest homes? The research explores current understandings and perceptions of the caregivers' role in attending to the spiritual needs of the residents by addressing a key set of related questions that arise from consideration of the rest home milieu. The research indicates that the move into a rest home is a turning point in the life of the residents. The changes involved in this transition may lead to a spiritual search for meaning, and to questioning that arises from a sense of being in transition from life to death. In the course of daily work, caregivers, as members of the team that provides holistic care, therefore relate to residents who are experiencing various spiritual challenges associated with rest home life and the vulnerability of ageing. Caregivers' confidence to respond to residents' spiritual needs was explored. The thesis suggests that there would be value in extending caregiver training to strengthen their capacity to recognise and respond to spiritual issues when they occur in the course of their work. Such training is seen as important if provision of care in rest homes for the aged population in New Zealand is to be truly holistic.</p>

Hear to Care: The role of caregivers in the spiritual care of residents in New Zealand Rest Homes

<p>This thesis argues that caregivers are exposed to the spiritual needs of rest home residents much more than might have previously been recognised, and that they are a more important part of the matrix of spiritual care than has been understood or acknowledged. By employing a qualitative research methodology, staff, residents and management at two rest homes in the greater Wellington region were interviewed to address the question: to what extent and in what ways is spiritual care a part of the caregiver role in New Zealand rest homes? The research explores current understandings and perceptions of the caregivers' role in attending to the spiritual needs of the residents by addressing a key set of related questions that arise from consideration of the rest home milieu. The research indicates that the move into a rest home is a turning point in the life of the residents. The changes involved in this transition may lead to a spiritual search for meaning, and to questioning that arises from a sense of being in transition from life to death. In the course of daily work, caregivers, as members of the team that provides holistic care, therefore relate to residents who are experiencing various spiritual challenges associated with rest home life and the vulnerability of ageing. Caregivers' confidence to respond to residents' spiritual needs was explored. The thesis suggests that there would be value in extending caregiver training to strengthen their capacity to recognise and respond to spiritual issues when they occur in the course of their work. Such training is seen as important if provision of care in rest homes for the aged population in New Zealand is to be truly holistic.</p>

Self-perception of nurses’ competence in family assessment and intervention

Objective. To describe nurses’ self-perception of competence in family assessment and intervention Methods. A sample of 551 Portuguese primary care nurses was selected. A Likert-type questionnaire with 11 items corresponding to the areas of care proposed by the Dynamic Model of Family Assessment and Intervention (MDAIF) was administered. Each item consists of 7 optional responses; a score equal to or greater than 4 denotes competence. Results. The nurses perceived themselves as competent in areas of care belonging to the development dimension of the MDAIF (parental role, adaptation to pregnancy, and family planning), as well as in the caregiver role (which belongs to the functional dimension). There was a progressive decline in self-perception of competence over the stages of the nursing process. Conclusion. In this study, crucial aspects related to nurses’ self-perception of their competence in family assessment and intervention were observed, and need to be addressed in the training of nurses in all areas of care included in the Model. This should facilitate awareness of the competences needed to provide the best care for families.

Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne’s interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.