“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

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The Breaking Point: Family Dementia Caregivers’ Recognition of the Need to Intervene

Innovation in Aging ◽

10.1093/geroni/igaa057.499 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-153

Author(s):

Candace Harrington ◽

Cheryl Dean-Witt ◽

Frances Hardin-Fanning

Keyword(s):

Early Recognition ◽

Family Care ◽

Role Identity ◽

Breaking Point ◽

Care Recipient ◽

Life Transition ◽

Structured Interviews ◽

Dementia Caregivers ◽

Rural Agriculture ◽

Dementia Caregiver

Abstract Family dementia caregivers are an under-recognized and valuable geriatric workforce whose services have broad implications for health care systems. Family dementia caregivers may experience uncertainty, loss of role identity, involuntary role assumption, or undesirable life transitions. Subsequent unintentional mistreatment or abuse of their family care recipient may occur. Approximately 50% of caregivers admit to some form of mistreatment of their loved one who lives with dementia. Using Selder’s (1989) life transition theory, this qualitative study explored family members’ life transition process toward their new role identities as family dementia caregivers to better understand the personal and historical contexts of caregiving. Semi-structured interviews were conducted with 10 participants to answer the questions: How does one acquire the role of primary family dementia caregiver?” and “How do personal and historical contexts inform the family dementia caregiver role?” Richness of data drove our sample size. Epistemological integrity ensured trustworthiness and rigor. A modification of Colaizzi’s (1978) analytic method was used for interpretative phenomenological analysis. The emergent themes uncovered by participants’ statements included: “It’s my turn”, “the breaking point”, and “a fine line” with the subtheme “balancing dignity and safety”. Participants described their introspective journeys toward a changed reality as family dementia caregivers. Our findings suggested the need for early recognition and vigilance to prevent the exploitation and mistreatment of those with dementia. Rural agriculture-based family caregivers in our study described unique and challenging characteristics. Further research is needed to explore the implications of these contextual nuances for rural agriculture-based family dementia caregivers.

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Typology of Technology-Supported Dementia Care Interventions From an In-Home Telehealth Trial

Western Journal of Nursing Research ◽

10.1177/0193945919825861 ◽

2019 ◽

Vol 41 (12) ◽

pp. 1724-1746 ◽

Cited By ~ 5

Author(s):

Sohyun Kim ◽

Clarissa Shaw ◽

Kristine N. Williams ◽

Maria Hein

Keyword(s):

Positive Reinforcement ◽

Psychological Symptoms ◽

Qualitative Content Analysis ◽

Dementia Care ◽

Video Data ◽

Care Recipient ◽

Dementia Caregivers ◽

Caregiver Support ◽

Care Experience ◽

Wide Range

Identifying the needs of dementia caregivers is critical for supporting dementia home care. This study identified a typology of expert interventions delivered to dementia caregivers during an innovative telehealth trial that used in-home video recordings to directly observe care challenges. Qualitative content analysis was used to analyze narrative notes describing interventions that were developed based on video data submitted by 33 caregiver–care recipient dyads. Two major themes emerged: education and skills for dementia care and caregiver support. Ten subthemes included education and skills related to: behavioral and psychological symptoms of dementia, disease expectations, safety, activities of daily living, medical care optimization, and medication utilization and caregiver support related to: respite, positive reinforcement, social and financial support, and self-care. Families providing in-home dementia care experience a wide range of care challenges. By using video data, dementia care experts were able to witness and evaluate challenging care situations and provide individualized feedback.

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Predicting Depression in Dementia Caregivers: Do Religious/Spiritual Struggles Play a Role?

Innovation in Aging ◽

10.1093/geroni/igaa057.3186 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 864-864

Author(s):

Elizabeth MacDougall

Keyword(s):

Mental Health ◽

Problem Behaviors ◽

Care Recipient ◽

Spiritual Struggle ◽

Dementia Caregivers ◽

Convenience Sample ◽

Dementia Caregiver ◽

Caregiver Mental Health ◽

Spiritual Struggles ◽

Clinically Significant

Abstract Using a stress process framework model, this study is the first to comprehensively examine the role that religious/spiritual struggles play in the lives of informal dementia caregivers. A convenience sample of 156 informal dementia caregivers completed a scale measuring six domains of religious/spiritual struggles, as well as other measures of primary stressors, background/contextual variables, and mental health outcome (depression). Overall levels of religious/spiritual struggle were low, but 26 percent of the sample were classified as possible cases of clinically significant religious/spiritual struggle for at least one of the six domains. Of this group, 49 percent acknowledged struggles with ultimate meaning. Religious/spiritual struggles predicted greater self-reported depression over and above number of care recipient problem behaviors (primary stressor), caregiver sex, and caregiver personality (i.e., emotional stability). Although no individual domain of religious/spiritual struggle emerged as most salient, caregivers reported significantly more ultimate meaning struggles than demonic or interpersonal struggles. These findings support the growing body of research suggesting that religious/spiritual struggles serve as a secondary stressor, adding predictive power to background/contextual factors and to primary stressors for informal dementia caregiver mental health outcomes. Further research in this area may advance efforts to better equip both secular and religious professionals to provide evidence-based counsel to informal dementia caregivers.

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Typologies of Dementia Caregiver Support Networks: A Pilot Study

The Gerontologist ◽

10.1093/geront/gnab013 ◽

2021 ◽

Author(s):

Esther M Friedman ◽

David Kennedy

Keyword(s):

Family Caregivers ◽

Support Networks ◽

Care Recipient ◽

Support Network ◽

Personal Network ◽

Large Networks ◽

Caregiver Support ◽

Dementia Caregiver ◽

Nationally Representative ◽

The U.S

Abstract Background and Objectives There are nearly 18 million family caregivers in the U.S. assisting an older adult in need of help. To identify the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWD) in the U.S. age 18 and over, including information on network members’ support to the caregiver and help to the care recipient. Results We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerable among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

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GAMEPLAN4CARE: AN ONLINE TRANSLATION OF REACH II REFINED THROUGH EARLY STAKEHOLDER USABILITY TESTING

Innovation in Aging ◽

10.1093/geroni/igz038.2493 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S674-S675

Author(s):

Jinmyoung Cho ◽

Alan B Stevens ◽

Thomas Birchfield ◽

Sandhya Sanghi ◽

Ashley Vernon ◽

...

Keyword(s):

Building Materials ◽

Usability Testing ◽

Skills Training ◽

Dementia Caregivers ◽

Caregiver Support ◽

Online Platform ◽

Intervention Delivery ◽

Dementia Caregiver ◽

Caregiver Health ◽

Reach Ii

Abstract Despite a number of evidences on the implementation of multicomponent education and support programs to improve the lives of dementia caregivers, there is still a need to adapt these interventions to various implementation settings and preferences of a new generation of caregivers. In this study, we present the development and usability testing of a dementia caregiver support program, GamePlan4Care (GP4C), an online translation of the Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II) intervention. The goal of the GP4C is to create an online family caregiver support system that would facilitate delivery of an evidence-based skills-training and support for dementia caregivers with the potential of both scalability and sustainability. GP4C includes the full breadth of REACH II education and skill-building materials, delivered within an automated, online platform with integrated support from a Dementia Care Specialist via telephone/video conferencing. Dementia caregivers, community agency staff, and other experts are involved in usability testing to ensure acceptability of this new approach to intervention delivery. The software development is completed and usability testing is currently underway. The feasibility and success of this new modality of intervention delivery will be made possible by an innovative intervention design supported by appropriate technical and content elements. We will also present the strategies employed to adapt the intervention to an online platform capable of supporting caregiver self-directed exposure to therapeutic content, the results of usability testing with approximately 32 caregivers, and feedback from other external stakeholders on the feasibility of this approach.

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EXPERIENTIAL AVOIDANCE IN A SAMPLE OF DEMENTIA CAREGIVERS

Innovation in Aging ◽

10.1093/geroni/igz038.1815 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S489-S489

Author(s):

Amy M Houston ◽

Elisabeth Harfmann ◽

Amy Olzmann ◽

Glenna Brewster ◽

Hannah Ottmar

Keyword(s):

Experiential Avoidance ◽

Psychological Flexibility ◽

Cognitive Fusion ◽

Dementia Caregivers ◽

Caregiver Support ◽

Financial Status ◽

Dementia Caregiver ◽

Male Caregivers ◽

Changing Demographics ◽

Number Of Individuals

Abstract Given the rapidly changing demographics, there will be an increasing number of individuals with dementia who will need significant support from informal caregivers. Providing care for an individual with dementia has been associated with negative outcomes in a number of domains including physical health, mental health, financial status and social functioning. There is a small but growing base of literature suggesting that fostering psychological flexibility, including acceptance, with dementia caregivers may be a helpful intervention. Experiential avoidance, which is the less adaptive alternative to acceptance, is the aversion from negative internal experiences including thoughts, feeling and physical sensations. Experiential avoidance has been found to be significantly related to depression and negative affect. The present study utilized online dementia caregiver support group samples (n = 158) to evaluate the relationship between experiential avoidance and general demographics, other aspects of psychological flexibility, and caregiver distress. Experiential avoidance was positively correlated with cognitive fusion (r(134) = .231, p < .01), caregiver burden (r(127) = .258, p < .01), and distress associated with dementia related behaviors (r(140) = .225, p < .01). Experiential avoidance was negatively correlated with engaged living (r(133) = -.244, p < .01), mindfulness (r(123) = -.187, p < .05), and self-rated health (r(138) = -.193, p < .05). Additionally, experiential avoidance was significantly higher for male caregivers (t(136)=2.462, p=.015) and those age 65 and over (t(134)=-2.421, p=.017). These findings support previous research that suggests experiential avoidance may be an important construct to target in future interventions with dementia caregivers.

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Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

Innovation in Aging ◽

10.1093/geroni/igaa057.1345 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 417-417

Author(s):

Hyo Jung Lee ◽

Jacobbina Jin Wen Ng

Keyword(s):

Decision Making ◽

End Of Life ◽

Adult Children ◽

End Of Life Care ◽

Death And Dying ◽

Family Members ◽

Life Care ◽

Joint Decision ◽

Aging Parents ◽

Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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Clinician Experiences Delivering Dementia Caregiver Support Services During COVID-19

American Journal of Geriatric Psychiatry ◽

10.1016/j.jagp.2021.01.002 ◽

2021 ◽

Author(s):

Emma D Quach ◽

Emily Franzosa ◽

Lauren R. Moo ◽

Christine W Hartmann

Keyword(s):

Support Services ◽

Caregiver Support ◽

Dementia Caregiver ◽

Clinician Experiences

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The Going to Stay at Home program: combining dementia caregiver training and residential respite care

International Psychogeriatrics ◽

10.1017/s1041610218000686 ◽

2018 ◽

Vol 30 (11) ◽

pp. 1697-1706 ◽

Cited By ~ 8

Author(s):

Meredith Gresham ◽

Megan Heffernan ◽

Henry Brodaty

Keyword(s):

Unmet Needs ◽

Respite Care ◽

Behavioral Symptoms ◽

Caregiver Training ◽

Dementia Caregivers ◽

Home Program ◽

Caregiver Depression ◽

Dementia Caregiver ◽

And Function ◽

At Home

ABSTRACTBackground:Caring for persons with dementia is stressful for family caregivers. Caregiver training programs and respite care can reduce this stress and help maintain persons with dementia living longer in the community. We evaluated a program that combines caregiver training with a residential respite stay.Methods:In total, 90 dyads of persons with dementia and their caregivers, in groups of 3–6 dyads, volunteered to participate in a five-day residential training program and were followed-up 6 and 12 months later. The primary outcome was caregiver depression; secondary outcomes were measures of caregiver burden, unmet needs, person with dementia behavioral symptoms, and the quality of life and function.Results:Caregiver depression and burden were unchanged, despite decreasing function in persons with dementia. Caregivers’ unmet needs and behavioral symptoms in persons with dementia decreased significantly. Compared to a group of persons with dementia admitted for routine residential respite care, there was a marked reduction in permanent placement over 12 months.Conclusions:The Going to Stay at Home Program is a feasible and practicable model with benefits for caregivers and persons with dementia. It may lead to delay in institutionalization and may be applicable to other chronic conditions.

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