Project VITAL: A Statewide Initiative Using Technology to Impact Social Isolation

Abstract Project VITAL leverages customized technology to enhance connection, engagement, education and support to individuals with dementia and their caregivers. The goal was to positively impact social isolation, stress, and well-being and help mitigate the effects of isolation experienced during the pandemic and beyond. Phase One included three components designed to impact connection, engagement, education and support. It’s Never Too Late provided 300 customized tablets to 150 care communities to facilitate connections to family members and increase individualized, person-centered engagement. Project ECHO, a video-based learning platform, educated and supported care community staff. Virtual education and support were offered to family caregivers at home. Phase Two provided the program to an additional 150 care communities and added online professional training/certification. Phase Three focuses on 150 family caregivers and individuals with dementia living at home. In addition to connection and individualized engagement, family caregivers now had direct access to virtual programs and services.

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Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being

Frontiers in Public Health ◽

10.3389/fpubh.2021.720180 ◽

2021 ◽

Vol 9 ◽

Author(s):

Lorna E. Prophater ◽

Sam Fazio ◽

Lydia T. Nguyen ◽

Gizem Hueluer ◽

Lindsay J. Peterson ◽

...

Keyword(s):

Online Education ◽

Family Caregivers ◽

Social Isolation ◽

Social Engagement ◽

Well Being ◽

Care Staff ◽

Project Echo ◽

Learning Platform ◽

People With Dementia ◽

The Impact

Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.

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Impact of iN2L Tablets on Loneliness and Well-Being: Findings of an Innovative Industry-AAA Program

Innovation in Aging ◽

10.1093/geroni/igab046.3399 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 949-950

Author(s):

Lydia Nguyen ◽

Karen O'Hern ◽

Adam Siak ◽

Kristi Stoglin ◽

Charlotte Mather-Tayor

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Social Isolation ◽

Well Being ◽

Case Managers ◽

Negative Consequences ◽

Negative Effects ◽

People With Dementia ◽

Innovative Program ◽

Adult Day Centers

Abstract Area Agency on Aging (AAA) senior and adult day centers closed due to COVID-19, causing many older adults to lose an important source of connection and engagement, leading to social isolation. To combat negative consequences, iN2L and a Florida AAA partnered on an innovative program providing iN2L tablets to AAA-supported older adults to use at home. The tablets have a simple interface, content specifically designed for older adults (e.g., games; music; movies), and video call capability. Participants included 51 independent older adults (mean age 77) and 39 family caregivers (mean age 59) of people with dementia. Participants completed phone surveys with AAA case managers at baseline and 3 months, including UCLA Loneliness Scale (3 item) and questions about their tablet experiences. Findings show positive trends for loneliness and well-being in both groups. At 3 months, lonely participants decreased from baseline by 25% for independent older adults and 18% for family caregivers. Over 80% of independent older adults agreed the tablet engages them in meaningful activities, provides daily enjoyment, and helps with relaxation. For family caregivers, 79% agreed the tablet is another tool in their caregiver toolkit and about 70% agreed the tablet adds daily enjoyment, helps with relaxation, and provides engagement in meaningful activities for their family member. Approximately 50% of caregivers felt happier, less stressed, and less irritable since using the tablets. This work has implications for the utility of technology in promoting engagement and connection, alleviating negative effects of social isolation, and the effectiveness of industry-AAA partnerships.

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The well-being of adult children while caring for a parent in home hospice: Evaluation of an automated remote monitoring and coaching system.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.222 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 222-222

Author(s):

Kathi Mooney ◽

Patricia Berry ◽

Jacquee Blaz ◽

Gary Donaldson

Keyword(s):

Family Caregivers ◽

Adult Children ◽

Remote Monitoring ◽

Negative Binomial ◽

Hospice Care ◽

Adult Child ◽

Well Being ◽

Poor Sleep ◽

Significant Finding ◽

At Home

222 Background: Health and well-being often deteriorates for family caregivers providing home hospice care. This includes adult children managing multiple demands while supporting their parent to remain at home. Automated remote monitoring of patient symptoms has shown promise in home cancer care and could be extended for monitoring and supporting the wellbeing of adult child caregivers (ACC) providing care to their parent at home. Methods: In a RCT, 97 ACCs were monitored using a telephone based automated reporting and coaching system, and randomly assigned to the ACC care intervention (Rx) (N = 51) or usual care (UC) (N = 46). All ACCs were asked to call the system daily reporting presence and severity (0-10 scale) of their own fatigue, poor sleep, depressed mood, anxiety and interference with normal activities. The Rx ACCs received automated tailored coaching based on reported patterns of moderate to severe symptom levels and alert reports were also sent to their hospice nurse. Results: ACCs were females (78%) with a mean age of 51. There were no differences between groups on any demographic or baseline measures. Utilizing negative binomial modeling, Rx ACCs had significantly fewer days/week of moderate-severe symptoms overall (.6 vs 2.4, p < .001) and for each individual symptom (all p < .001). Among those attempting to maintain work, Rx ACCs were able to work 80% of work days and UC ACCs worked 68% of work days. Six weeks after their parent’s death, there was a statistical trend (p = .07) for Rx ACCs to be less depressed than UC ACCs (11.94 vs 18.04). This is a clinically significant finding as UC ACCs’ CESD scores were at the clinically actionable level ( > 16) for referral for evaluation of depression. Rx ACCs’ CESD scores had dropped an average of 1.37 points below their baseline whereas UC ACCs’ scores had increased an average of 3.86 points from baseline at 6 weeks post death. Conclusions: Automated remote monitoring and coaching for adult child family caregivers offers impressive benefit in reducing the physical burden and psychosocial distress of caregiving during and after parental hospice care. Clinical trial information: NCT02112461.

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Dementia Caregiving During the “Stay-at-Home” Phase of COVID-19 Pandemic

The Journals of Gerontology Series B ◽

10.1093/geronb/gbaa129 ◽

2020 ◽

Author(s):

Jyoti Savla ◽

Karen A Roberto ◽

Rosemary Blieszner ◽

Brandy Renee McCann ◽

Emily Hoyt ◽

...

Keyword(s):

Family Caregivers ◽

Stress Responses ◽

Well Being ◽

Role Overload ◽

Transactional Model ◽

Dementia Caregivers ◽

Telephone Interviews ◽

Primary Appraisal ◽

Secondary Appraisal ◽

At Home

Abstract Objective The objective of this study was to assess family caregivers’ primary appraisal of stressors related to COVID-19 stay-at-home orders, secondary appraisal of resources and support availability, and use of coping strategies as predictors of perceived role overload during the stay-at-home phase of the pandemic. Method Telephone interviews with 53 family caregivers of persons with dementia from rural Virginia 2 weeks after enactment of the governor’s stay-at-home order using structured and open-ended questions were conducted. Results Caregivers who were more concerned about the COVID-19 pandemic were at greater odds of experiencing high role overload than those who recognized positive aspects of the pandemic, as were those who received insufficient support from family and friends. Discussion Use of the transactional model of stress responses yielded important insights about families coping with dementia. Caregivers’ perceptions of the pandemic’s impact varied, with differential effects on their well-being.

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The Cost of Isolation

Social Science Protocols ◽

10.7565/ssp.v4.6190 ◽

2021 ◽

Vol 4 ◽

pp. 1-9

Author(s):

Sheila A. Boamah ◽

Vanina Dal Bello-Haas ◽

Rachel Weldrick

Keyword(s):

Family Caregivers ◽

Social Isolation ◽

Psychological Health ◽

Long Term Care ◽

Secondary Analysis ◽

Significant Risk ◽

Well Being ◽

Term Care ◽

Health And Wellbeing

Background: Recent research has found that family (e.g., informal, unpaid) caregivers to those in long-term care can experience significant risk of social isolation, a harmful social outcome linked to poor health and wellbeing. For many, the COVID-19 global pandemic has been a time marked by challenges that have exacerbated existing risk of social isolation and has likely impacted mental health and wellbeing among caregivers. As such, this paper outlines a protocol to investigate the extent to which the COVID-19 pandemic has impacted the psychological health and well-being of family caregivers of people living in residential long-term care. Methods/Design: A descriptive phenomenological design and photovoice methodology will be used alongside focus groups to capture the perspectives and voices of 15-20 family caregivers. Data will be analyzed thematically, and themes will be developed collaboratively alongside participants. A secondary analysis will be guided by a cumulative inequality lens to consider how the COVID-19 pandemic has differentially affected caregivers. Discussion: The results will fill a significant gap in the existing literature on caregiver isolation during this pandemic and inform the development and/or refinement of caregiver supports.

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Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer

Journal of Oncology Practice ◽

10.1200/jop.2016.017913 ◽

2017 ◽

Vol 13 (1) ◽

pp. 35-41 ◽

Cited By ~ 28

Author(s):

Leonard L. Berry ◽

Shraddha Mahesh Dalwadi ◽

Joseph O. Jacobson

Keyword(s):

Family Caregivers ◽

Well Being ◽

Social Needs ◽

Loved One ◽

Patients With Cancer ◽

Common Goals ◽

Funding Support ◽

Caregiving Roles ◽

Basic Medical ◽

At Home

Patients with cancer who live at home often require help with activities of daily living, basic medical care (eg, injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient’s family. These family caregivers themselves require support so that they can be effective and maintain their own well-being while caring for the patient with cancer. Research shows that support for caregivers contributes to achieving these goals. We propose a four-part framework for supporting family caregivers: (1) assess caregivers’ needs using formal measures, just as the cancer patient’s own needs are assessed, (2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home, (3) empower caregivers to become full-fledged members of the patient’s cancer team, all working toward common goals, and (4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal. Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic cancer care.

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Exploring resilience and well-being of family caregivers of people with dementia exposed to mandatory social isolation by COVID-19

Dementia ◽

10.1177/14713012211042187 ◽

2021 ◽

pp. 147130122110421

Author(s):

David Sánchez-Teruel* ◽

María Auxiliadora Robles-Bello* ◽

Mariam Sarhani-Robles ◽

Aziz Sarhani-Robles

Keyword(s):

Family Caregivers ◽

Social Isolation ◽

Emotional Regulation ◽

Online Survey ◽

Health Care Systems ◽

Well Being ◽

Physical And Mental Health ◽

Predictive Variables ◽

People With Dementia ◽

Care Systems

Background The COVID-19 pandemic has raised questions about the resilience of health care systems worldwide. In this regard, one group of people whose physical and mental health has been affected has been family caregivers of people with dementia. Objective This study aims to identify the variables that predict a high degree of well-being in family caregivers of people with dementia during this period of mandatory lockdown. Methods A total of 310 respondents participated in an online survey (266 women and 44 men) from various regions in Spain, aged between 20 and 73 years old (M = 46.45; SD = 15.97), and all were family members. Results The results showed that there were notable differences in all the protective variables, together with a significant strong positive relationship between well-being and resilience ( r = 0.92; p < 0.01) and with coping strategies ( r = 0.85; p < 0.01), and there were also some significant negative relationships between well-being and difficulties in emotional regulation (ρ = −.78; p < 0.01). The most predictive variables of a higher level of well-being included the type of dementia (β = 1.19; CI (95%) = 1.01-1.29; p< 0.01), living in a large house (β = 0.97; CI (95%) =. 23-0.98; p < 0.01), social support as a coping strategy (β = 1.27; CI (95%) = 1.21-1.29; p < 0.01) and mainly resilience (β = 1.34; CI (95%) = 1.30-1.37; p < 0.01). Discussion We discuss the importance of promoting higher levels of resilience through the development of protective psychosocial variables in caregivers of people with dementia exposed to situations of mandatory social isolation as a modulator of the psychosocial well-being of these family caregivers.

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The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care

Palliative & Supportive Care ◽

10.1017/s1478951508000370 ◽

2008 ◽

Vol 6 (3) ◽

pp. 231-238 ◽

Cited By ~ 28

Author(s):

Christina Melin-Johansson ◽

Gunvor Ödling ◽

Bertil Axelsson ◽

Ella Danielson

Keyword(s):

Quality Of Life ◽

Home Care ◽

Family Caregivers ◽

Well Being ◽

The Body ◽

Incurable Cancer ◽

Palliative Home Care ◽

Breathing Space ◽

At Home

ABSTRACTObjective:The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.Methods:To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.Results:Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.Significance of results:This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

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