Adapting the SHARE Program for Use With Families Facing the Challenges of Chronic Illness

Abstract Advances in diagnostic procedures have helped to make diagnosing Alzheimer’s disease and other dementias more accurate and to occur earlier in the disease progression. For persons living with dementia and their family care partners, finding programs that meet their needs for support post diagnosis can be challenging. Likewise, for persons with chronic conditions, few programs exist which help care dyads to create a manageable plan of care that addresses each person’s concerns and fears. SHARE, (Support, Health, Activities, Resources, and Education), originally designed for dementia care partners, has shown positive outcomes for both members of the care partnership. This presentation describes the development of the six-session SHARE intervention, its implementation in community settings, and its current standing as an evidence-based program and product that has been commercialized. Discussion will also focus on adapting SHARE for use with chronic illness families, highlighting revisions to program procedures, materials, recruitment, and evaluation.

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Support, Health, Activities, Resources, & Education (SHARE): New Program Innovations for Early-Stage Families

Innovation in Aging ◽

10.1093/geroni/igaa057.2133 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 625-626

Author(s):

Carol Whitlatch ◽

Steven Zarit ◽

Steven Zarit

Keyword(s):

Early Stage ◽

Home Monitoring ◽

Family Care ◽

Positive Outcomes ◽

Program Support ◽

Care Partners ◽

Diagnosis Of Dementia ◽

Recent Diagnosis ◽

Group Version

Abstract Persons living with a recent diagnosis of dementia experience great uncertainty and stress as they and their families try to adjust to the new reality of their lives and futures. One fruitful strategy for intervening with these families is to include both the person living with dementia and their family care partner in the program. Although dyadic approaches are rare among early-stage programs, promising examples exist. The SHARE Program (Support, Health, Activities, Resources, and Education) is one exception where dyadic materials address: 1) current and long- term needs of care partners, and 2) how the family can develop a realistic plan of care based on their care values and preferences. This symposium describes the development and positive outcomes of the original SHARE intervention and the promising adaptations that expand how and to whom the intervention is delivered. Presentations explore: 1) the original SHARE for Dementia program and strategies for expanding its reach into chronic conditions populations (Orsulic-Jeras & Whitlatch), 2) a group version translated into Spanish (“EPIC: Early-stage Partners in Care,” Dr. Coon), and 3) the development of a remote needs assessment and unobtrusive in-home monitoring technology platform that guides care planning and helps to maintain independence (“SHARE-sense,” Dr. Miller). Discussion will focus on the challenges, unique solutions, and positive outcomes when adapting SHARE to different settings and populations (Dr. Zarit).

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Engagement with a diverse Stakeholder Advisory Council for research in dementia care

Research Involvement and Engagement ◽

10.1186/s40900-021-00297-8 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Sara S. Masoud ◽

Ashlie A. Glassner ◽

Neela Patel ◽

Mayra Mendoza ◽

Deborah James ◽

...

Keyword(s):

Stakeholder Engagement ◽

Social Care ◽

Family Care ◽

Research Process ◽

Dementia Care ◽

Advisory Council ◽

Structured Interviews ◽

Care Research ◽

Care Partners ◽

Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

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Engagement with a Diverse Stakeholder Advisory Council for Research in Dementia Care

10.21203/rs.3.rs-300254/v1 ◽

2021 ◽

Author(s):

Sara Suzanne Masoud ◽

Ashlie A. Glassner ◽

Neela Patel ◽

Mayra Mendoza ◽

Deborah James ◽

...

Keyword(s):

Stakeholder Engagement ◽

Social Care ◽

Family Care ◽

Research Process ◽

Dementia Care ◽

Advisory Council ◽

Structured Interviews ◽

Care Research ◽

Care Partners ◽

Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N=11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n=2); family care partners (n=4), and health and social care professionals in dementia care (n=5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

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Coaching Care Partners Who Support Loved Ones With MCI

Perspectives on Gerontology ◽

10.1044/gero19.2.50 ◽

2014 ◽

Vol 19 (2) ◽

pp. 50-56 ◽

Cited By ~ 1

Author(s):

Kerry Mills ◽

Jennifer Brush

Keyword(s):

Cognitive Functioning ◽

Educational Program ◽

Social Withdrawal ◽

Quality Care ◽

Critical Role ◽

Family Care ◽

Speech Language Pathologists ◽

Care Partners ◽

Provide Quality Care ◽

Solution Focused

Speech-language pathologists can play a critical role in providing education and intervention to prevent social withdrawal, prevent premature disability, and maximize cognitive functioning in persons with MCI. The purpose of this article is to describe positive, solution-focused educational program that speech-language pathologists can implement with family care partners to improve relationships and provide quality care for someone living with MCI.

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Twenty-first century implementation of evidence-based parent training programs in community settings

PsycEXTRA Dataset ◽

10.1037/e580622012-002 ◽

2011 ◽

Author(s):

Karen S. Budd ◽

Aaron R. Lyon

Keyword(s):

Parent Training ◽

Training Programs ◽

First Century ◽

Evidence Based ◽

Community Settings ◽

Parent Training Programs ◽

Twenty First Century

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Pre‐loss group therapy for dementia family care partners at risk for complicated grief

Alzheimer s & Dementia Translational Research & Clinical Interventions ◽

10.1002/trc2.12167 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Katherine P. Supiano ◽

Troy Andersen ◽

Marilyn Luptak ◽

Cynthia Beynon ◽

Eli Iacob ◽

...

Keyword(s):

At Risk ◽

Group Therapy ◽

Complicated Grief ◽

Family Care ◽

Care Partners

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Facing the Journey Together: Using Digital Media to Support Dementia Care Among Asian Americans

Innovation in Aging ◽

10.1093/geroni/igaa057.1762 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 542-542

Author(s):

Angelica Yeh ◽

Marie Mayen-Cho

Keyword(s):

Los Angeles ◽

Digital Media ◽

The United States ◽

Dementia Care ◽

Pacific Islanders ◽

Japanese American ◽

Culturally Appropriate ◽

Care Partners ◽

Care Information ◽

Depth Interviews

Abstract Asians and Pacific Islanders (APIs) in the United States have limited access to dementia care information that is linguistically and culturally appropriate. Alzheimer’s Los Angeles created “Faces of Caregiving”, a video project available with English/Japanese subtitles, documenting in-depth interviews with 7 Japanese/Japanese-American familial care partners of individuals living with dementia. It touched on the personal yet universal aspects of each journey embedded in a particular family context. The 5 video profiles were subsequently shown at 3 community sites to attendees comprised of mostly older-adult APIs. Among 85 attendee responses, approximately 90% stated they were more likely to seek out information on and support for Alzheimer’s disease, felt more open to talking about the disease, and were more likely to advocate and raise awareness for the disease. This program could be replicated for other API communities, allowing individuals to learn more effectively from a peer-to-peer experience in a culturally familiar setting. Part of a symposium sponsored by the Aging Among Asians Interest Group.

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Developing a new behavioral framework for dementia care partner resilience (CP-R): A mixed research synthesis

The Gerontologist ◽

10.1093/geront/gnaa218 ◽

2020 ◽

Author(s):

Yuanjin Zhou ◽

Avery O’Hara ◽

Emily Ishado ◽

Soo Borson ◽

Tatiana Sadak

Keyword(s):

Help Seeking ◽

English Language ◽

Relevant Literature ◽

Research Synthesis ◽

Dementia Care ◽

Domain Identification ◽

Care Partners ◽

Learning From Others ◽

Design And Methods ◽

The Impact

Abstract Background and Objectives Caring for a person living with dementia requires resilience, the capacity to recover and grow from challenging situations. Despite the increasing interest in assessing and promoting resilience for dementia care partners, behaviors that indicate this attribute are not well known. The goal of this study is to synthesize the literature to identify resilience-related behaviors and develop a new framework for future validation and intervention research. Research Design and Methods We searched English-language peer-reviewed articles (January 1991 – June 2019) reporting qualitative or quantitative descriptions of resilience-related behaviors among dementia care partners. Thematic analysis was used to categorize behaviors into domains, identify the relationships among them, and generate a thematic map. Results Sixteen articles were identified according to predefined inclusion criteria. Four domains emerged: (1) problem-response behaviors (problem-solving, problem-distancing); (2) self-growth behaviors (self-care activities, spiritual-related activities, and developing and maintaining meaningful social relationships); (3) help-related behaviors (help-seeking and help-receiving), and (4) learning-related behaviors (learning from others and reflection). Definitions of each domain, identification of corresponding behaviors, and formulation of Care Partner Resilience (CP-R) behavioral framework were informed by this mixed research synthesis and other relevant literature. Discussion and Implications The CP-R framework emerged as a result of a new focus on identifying and cultivating strengths instead of evaluating strain and burden. It serves as a useful foundation for understanding the impact of specific behaviors on dementia care partner resilience. Once validated, this framework will inform the development of future measures, research, interventions, and policies for dementia care partners.

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