Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

What Were the Processes and Outcomes of Offering Shared Reading as an Intervention for Veterans in Prison?

The charity Reading Force encourages Forces families to read together in order to build social, emotional, and mental well-being and offset the impact of the changes and separations routine in military life. They distribute reading scrapbooks and free books and encourage families to work on them together. It was suggested that a version of the project might usefully be developed for veterans in prison, whose families experience many of the same issues. Scrapbook Dads was developed for veterans housed in the Endeavour Wing at Parc Prison, South Wales. The materials were adapted for use by prisoners and their families. They had just been distributed when the pandemic struck, visiting and social/educational activities were cancelled, and the prison went into lockdown. With the materials readily available, the project was heavily used by prison staff to seek to maintain prisoner morale and support family connectivity. This paper charts the process, comments on what was learned, and makes recommendations for how shared reading can be used in prisons in future.

How can music therapy support family relationships for people living in a long-term care facility with neuro-disabilities, when regular visits can be challenging?

<p>This exegesis will present the findings which emerged from secondary analysis of clinical practice data collected during a music therapy placement. The setting for this research is a long-term residential care facility for people aged 18 to 65 with a variety of physical and neurological conditions, including cerebral palsy, traumatic brain injury, stroke and multiple sclerosis. The aim of the facility is to maximise the quality of life for the residents and support their medical needs. The research aim was developed out of a personal interest regarding how family members might be included in music therapy sessions. The research question evolved into “How can music therapy support family relationships for people living in a long-term care facility with neuro-disabilities, when regular visits can be challenging”. The core themes suggest family relationships can be enhanced through conversations, the gift of music, culture, artefacts, ritual and other activities. The findings include a case vignette to illustrate important points made in the exegesis. Overall, I believe this research will add new insight into the importance of family connections in rehabilitation and overall wellbeing for the residents.</p>

How can music therapy support family relationships for people living in a long-term care facility with neuro-disabilities, when regular visits can be challenging?

<p>This exegesis will present the findings which emerged from secondary analysis of clinical practice data collected during a music therapy placement. The setting for this research is a long-term residential care facility for people aged 18 to 65 with a variety of physical and neurological conditions, including cerebral palsy, traumatic brain injury, stroke and multiple sclerosis. The aim of the facility is to maximise the quality of life for the residents and support their medical needs. The research aim was developed out of a personal interest regarding how family members might be included in music therapy sessions. The research question evolved into “How can music therapy support family relationships for people living in a long-term care facility with neuro-disabilities, when regular visits can be challenging”. The core themes suggest family relationships can be enhanced through conversations, the gift of music, culture, artefacts, ritual and other activities. The findings include a case vignette to illustrate important points made in the exegesis. Overall, I believe this research will add new insight into the importance of family connections in rehabilitation and overall wellbeing for the residents.</p>

Use of Telehealth to Support Family Caregivers of Hospice Patients During the COVID-19 Pandemic

Family caregivers of hospice patients faced additional challenges in the context of the COVID-19 pandemic where social isolation and loneliness that are often observed among those taking care of a loved one at the end of life, were exacerbated by social distancing rules and workflow changes introduced by hospice agencies. The use of telehealth technologies has the potential to facilitate the delivery of supportive services for family caregivers. We conducted a study examining the use of telehealth for the delivery of a supportive intervention based on problem solving therapy and positive appraisal theory designed specifically to support family caregivers of hospice patients during the COVID-19 pandemic. We recruited 248 caregivers who each participated in three telehealth sessions over a month; caregivers reported higher levels of quality of life and lower levels of anxiety post intervention. Specific recommendations for inclusive telehealth design are discussed based on lessons learned.

Caregiver Services: Needs, Benefits, and Best Practices

Just under 1 in 5 Americans (19.2%) are caregivers for adults with chronic illnesses. Caregiving is the great equalizer as caregiving remains an activity that occurs among all generations, racial/ethnic groups, income or educational levels, family types, gender identities, and sexual orientations. This presentation will provide a snapshot of the current status of caregiving in the United States. It will explore why caregiver services are needed and will highlight the impacts many caregivers face as a result of their stepping up to help family and friends. In addition, this presentation will discuss what is considered best practice in caregiver services and how the public and private sectors can work together to develop solutions to support family caregivers and those under their care.

State-Level Policy Actions to Support Family Caregivers

The stresses created by the growing need for family caregivers have failed to prompt federal policy action; in its absence, states are stepping up. This review of state policies that support employment among family caregivers found six main categories of legislative action: paid leave; expanding federally mandated unpaid leave; paid sick time; unemployment insurance for job loss attributable to caregiving duties; establishing family caregivers as a protected classification in employment discrimination; and flexible or alternative work schedules. Despite the demand for policies that support and empower working caregivers, a minority of states have passed such legislation; to date, 9 states have implemented paid family leave; 14 have implemented mandatory sick leave legislation; and 14 have expanded FMLA. This study discusses state-level policy actions, reviews the status and importance of these policies, and finds that despite gaps in caregiver support legislation at the state level, there is significant and promising momentum.

Innovations in Workforce Education for Family Caregiving

The number of adults providing care to a family member in the US is estimated at more than 50 million, with nearly half of those individuals providing complex care. National organizations, such as AARP, and federal programs, such as the Geriatric Workforce Enhancement Program, have identified the family caregiver as an integral member of the health care team, yet there is a paucity of clinical workforce education programs for how best to partner and support family caregivers. A virtual summit was held in September 2020 to highlight existing educational programs designed to prepare undergraduate and graduate health professional students or practicing clinicians in their efforts to support family caregivers. The meeting consisted of a keynote, 6 podium presentations and 12 poster presentations. Primary themes emerged around target learners, curricula topics, and outcomes. Programs targeted learners from across the workforce, from undergraduate students to continuing professional education programs, with the majority targeting graduate (masters and doctoral) learners. Several programs were interprofessional in development, delivery and target learner. Curricula topics varied across programs and included caregiver assessments, multicultural considerations, communication, care plan development and risk screening. Education outcomes primarily focused on assessment of participants’ confidence and knowledge. The summit highlighted that the topic of family caregiving is included in clinical education inconsistently, if at all. The summit helped identify gaps in education, curriculum development, and the need for common learning outcomes to strengthen a clinician’s ability to support family caregivers as part of the care team.

Lessons From Disruption: A New Normal for Families and Care Partners

COVID-19 has forced community-dwelling older adults to rely on family members and care partners more than ever before for support. Often at the expense of their own health and well-being, family members and care partners help older adults manage physical and psychosocial needs, navigate a complex, ever-changing healthcare system, and follow public health guidelines. Given the increasing demands and poor outcomes, there is no better time than now to develop policies and practices that better recognize and support family members and care partners of older adults. To inform policy and practice development, this symposium will present findings from a literature review of peer-reviewed studies published from 2019 through 2021 that identifies and addresses challenges and opportunities related to caregiving for an older adult in a pandemic. The experiences of the past year demonstrate that the new normal needs to recognize and support family members and care partners.