Exploring Memory Care Clinics in Minnesota: A Qualitative Analysis.

OBJECTIVES: We explored memory clinic care provision in Minnesota, examining diversity and similarities of services provided and challenges faced. We also considered how well their services and care philosophies aligned with national dementia care practice recommendations. METHODS: We created a 53-question interview guide and interviewed 11 memory clinics across Minnesota in late 2019. Interview transcripts were analyzed using Braun and Clarke's thematic analyses in NVivo 12. RESULTS: We identified 6 themes regarding financial issues, staffing, appointment logistics, care provision during and after the memory evaluation as well as features of an ideal clinic. CONCLUSIONS: Memory evaluation and care provision were very different across clinics, primarily due to team make-up, particularly team size and specialty. However, memory care providers shared a passion for providing patient-centered memory care, emphasizing family and patient education and partnership. Their care was largely aligned with national memory care recommendations. Common challenges, including maintaining financial stability and clinic efficiency, exerted significant influence on clinic functioning and survival.

"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

A Critical Approach to Aging in Place: A Case Study Comparison of Personal and Professional Perspectives from the Minneapolis Metropolitan Area.

The concept of aging in place attracts older adults, scholars, policymakers, and service providers alike. Interviews with 125 independent-dwelling men and women (mean age 71 years) and ten policymakers/community service providers queried for elements of urban and suburban contexts that strengthen or weaken desires and abilities to age in place. Overall, interviewees emphasized the need for accessible and affordable housing, reliable services, robust transportation infrastructure, and suitable options for health and care. Perspectives of low-income participants diverged notably from mainstream conceptions: those in perilous-subsidized housing desired to move to safer and more comfortable settings and homeless participants did not have a stable home or community to age in place. Planning and implementation of aging in place framed in highly individualistic, resourced, and ableist conception did not address their everyday struggles, including the lack of affordable housing and defunding of supportive social services. The manuscript complicates idealized notions of aging in place and suggests new theoretical and empirical directions to expand the concept to become more inclusive and socially just.

Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling.

Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver-staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.

The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study.

BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management. OBJECTIVE: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. METHODS: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status. RESULTS: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. CONCLUSIONS: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.

The ResidentialCare Transition Module: a single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care.

BACKGROUND: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. METHODS: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. DISCUSSION: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. TRIAL REGISTRATION: ClinicalTrials.gov (NCT02915939, prospectively registered).

Perceptions of precision medicine among diverse dementia caregivers and professional providers.

INTRODUCTION: Underrepresented groups experience health disparities and a history of exploitation by researchers and the health-care system that may contribute to distrust of new treatments and technologies. This study aims to understand how diverse family caregivers and health-care professionals view the benefits and risks of precision medicine as well as cultural dimensions to consider when developing and implementing precision medicine interventions in dementia care. METHODS: Eight focus group sessions and one individual interview were conducted over a 6-month period. Fifty-four focus group participants included African-American, American Indian, rural Caucasian, Latino, and West African caregivers and health professionals. The majority of participants were female (73%) and were of Hispanic/Latino ethnicity (68%). About a third of participants identified their race as white. Participants were presented with four hypothetical scenarios related to precision medicine diagnostic and treatment approaches in dementia care: (1) genetic testing for dementia risk, (2) health-care informatics to determine individualized medication dosages based on health and family history, (3) a smartphone application providing dementia caregiving tips, and (4) remote activity monitoring technology in the home. Focus groups' responses were coded using thematic analysis. RESULTS: Participants indicated skepticism regarding the use of precision medicine in their communities. Concerns included cost of precision medicine and insurance coverage; lack of alignment with cultural norms; fraught relationships between communities, health professionals, and researchers; data ownership and privacy; and the trade-off between knowing risk and treatment benefit. DISCUSSION: Establishing relationships with underserved communities is crucial to advancing precision medicine in dementia care. Appropriate engagement with diverse racial, ethnic, and geographic communities may require significant investment but is necessary to deliver precision medicine effectively.

A Web-Based Mobile App With a Smartwatch to Support Social Engagement in Persons With Memory Loss: Pilot Randomized Controlled Trial.

BACKGROUND: It is estimated that the number of individuals living with dementia worldwide will increase from 50 million in 2017 to 152 million by 2050. Assistive technology has been recognized as a promising tool to improve the lives of persons living with memory loss and their caregivers. The use of assistive technology in dementia care is expanding, although it is most often intended to manage care and promote safety. There is a lack of assistive technology designed to aid persons with memory loss in participating in meaningful activities. The Social Support Aid (SSA) is a mobile phone-based app that employs facial recognition software. It was designed to assist persons with memory loss remember the names and relationships of the people they interact with to promote social engagement. OBJECTIVE: This study uses a pilot randomized controlled trial (RCT) design to evaluate the SSA. The objectives were to ascertain (1) the feasibility and utility of the SSA, (2) whether the outcomes of SSA use suggest potential benefits for persons living with memory loss and their care partners, and (3) how study design components could inform subsequent RCTs. METHODS: Persons with memory loss were randomized to the SSA (n=20) or the usual care control group (n=28). Quantitative data were collected at three timepoints (baseline, 3 months, and 6 months). Participants in the intervention group participated in qualitative interviews following completion of their 6-month survey. RESULTS: Participant eligibility, willingness to be randomized, and retention were not barriers to conducting a full-scale RCT; however, recruitment strategies should be addressed before doing so. Feasibility and utility scores indicated that participants felt neutral about the technology. Use of the SSA was not significantly associated with changes in quality of social interactions or quality of life measures over the 6 months of follow-up (P>.05). The qualitative analysis revealed three themes that described how and why the SSA worked or not: (1) outcomes, (2) reasons why it was or was not useful, and (3) recommendations. CONCLUSIONS: There is a need to develop effective assistive technology that improves the quality of life of persons with memory loss. Assistive technology that allows persons living with memory loss to maintain some level of autonomy should be a priority for future research. This study suggests reasons why the SSA facial recognition software did not appear to improve the quality of social interaction and quality of life of people with memory loss. Results also provide recommendations for future assistive technology development and evaluation. TRIAL REGISTRATION: ClinicalTrials.gov NCT03645694; https://clinicaltrials.gov/ct2/show/NCT03645694 (Archived by WebCite at http://www.webcitation.org/78dcVZIqq).

Stakeholder Engagement to Enhance Interventions for Family Caregivers of People with Dementia: A Case Study of Care to Plan.

Family members are prominent providers of necessary care to persons with dementia. The psychological, emotional, and social costs of care have led to the development of interventions to support these families. Although evidence supports the effectiveness of dementia caregiver interventions, few have been implemented into practice. Stakeholder involvement may increase the potential for interventions to be integrated into community contexts. Utilization of community advisory boards (CABs) have been identified as a successful strategy to engage stakeholders in research and intervention development. Yet, little is known about the use of CABs when developing and refining interventions in dementia care. This article presents a case study of a CAB intended to inform the development and translation of an online dementia caregiver resource: Care to Plan. Qualitative thematic analysis of transcripts from seven CAB meetings over a 3-year period identified two major categories. First, the CAB process: who participated, how meetings were conducted, and issues that arose. Second, Care to Plan improvement: how CAB members provided key stakeholder perspectives resulting in changes in language, functionality, substance, and dissemination. Findings demonstrate how CABs can inform gerontological social work when facilitating the development, translation, and implementation of meaningful, community-based resources for dementia caregivers.