The REACH OUT Caregiver Support Program

2021 ◽  
Author(s):  
Louis D. Burgio ◽  
Matthew J. Wynn
Keyword(s):  
Family Caregivers ◽  
Family Relationships ◽  
Challenging Behaviors ◽  
Well Being ◽  
Physical And Mental Health ◽  
Risk Area ◽  
Caregiver Support ◽  
Caregiver Health ◽  
People With Dementia ◽  
Risk Areas

Our nation increasingly relies on family members or friends (i.e., informal caregivers) for needed care and support as we age. Family caregivers typically assume their caregiving role willingly and reap personal fulfilment from helping a family member, developing new skills, and strengthening family relationships. For these benefits, however, caregivers often sacrifice their own health and well-being. Depression, anxiety, poor physical health, and compromised immune function are more common among family caregivers than in adults not providing such care. The REACH OUT (Resources for Enhancing Alzheimer’s Caregiver Health: Offering Useful Treatments) program is a multicomponent, tailored, and flexible intervention for caregivers of people with dementia focused on the evidence-based therapeutic strategy of problem solving. This work is designed to guide clinicians through the process and provide them the necessary tools to share with caregivers with the goal of enhancing caregiver physical and mental health. Five common risk areas (home safety, caregiver health, social support, challenging behaviors, and emotional well-being) are described in the manual; and interventions are described that respect the nuances of each risk area. By beginning with an individualized risk assessment and being flexible to the needs and issues of the caregiver, the REACH OUT intervention helps clinicians identify risk areas and provide caregivers with tailored action plans to reduce risk and promote well-being.

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

Dementia ◽  
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.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

Psychosocial Care for Family Caregivers of Patients With Cancer

2012 ◽  
Vol 30 (11) ◽  
pp. 1227-1234 ◽  
Author(s):  
Laurel Northouse ◽  
Anna-leila Williams ◽  
Barbara Given ◽  
Ruth McCorkle
Keyword(s):  
Family Caregivers ◽  
Sleep Disturbances ◽  
Well Being ◽  
Future Research ◽  
Care Practice ◽  
Physical And Mental Health ◽  
Policy And Practice ◽  
Patients With Cancer ◽  
Cancer Support ◽  
Recommendations For Practice

Purpose To understand family caregivers' needs for better preparation and care, this state-of-the-science review examines the effect of caregiving on the health and well-being of caregivers, the efficacy of research-tested interventions on patient and caregiver outcomes, implications of the research on policy and practice, and recommendations for practice and future research. Methods We reviewed research that described the multiple effects of cancer on caregivers' well-being. Five meta-analyses were analyzed to determine the effect of interventions with caregivers on patient and caregiver outcomes. In addition, we reviewed legislation such as the Affordable Care Act and the Family Leave Act along with current primary care practice to determine whether family caregivers' needs have been addressed. Results Research findings indicate that caregiver stress can lead to psychological and sleep disturbances and changes in caregivers' physical health, immune function, and financial well-being. Research-tested interventions delivered to caregivers of patients with cancer or other chronic illnesses can reduce many of these negative effects and improve caregivers' coping skills, knowledge, and quality of life. Although these interventions also decrease patients' symptoms, reduce mortality (non-dementia patients), and improve patients' physical and mental health, they are seldom implemented in practice. Conclusion Recommendations for practice include development of standardized guidelines that address caregiver assessment, education, and resources; identification of “caregiver champions” in practice settings; provision of referrals to established support organizations for caregivers (eg, Cancer Support Community, Cancer Care); and collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers.

scholarly journals Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review

2017 ◽  
Vol 29 (8) ◽  
pp. 1281-1296 ◽  
Author(s):  
Jacki Stansfeld ◽  
Charlotte R. Stoner ◽  
Jennifer Wenborn ◽  
Myrra Vernooij-Dassen ◽  
Esme Moniz-Cook ◽  
...  
Keyword(s):  
Systematic Review ◽  
Positive Psychology ◽  
Quality Assessment ◽  
Psychometric Properties ◽  
Family Caregivers ◽  
Outcome Measures ◽  
Well Being ◽  
Positive Outcome ◽  
Future Research ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.Method:A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.Results:Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.Conclusions:There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

scholarly journals Physical and Mental Health Effects of Characteristics of Caregivers and the Caregiving Situation

2021 ◽  
Vol 9 (7) ◽  
pp. 116-139
Author(s):  
Chong-Hwan Son
Keyword(s):  
Mental Health ◽  
Family Caregivers ◽  
Mental Health Problems ◽  
Informal Caregivers ◽  
Support Programs ◽  
Physical And Mental Health ◽  
Cross Sectional ◽  
Term Care ◽  
Caregiver Support ◽  
Caregiver Education

The present study investigated the effects of characteristics of caregivers and the caregiving situation on family caregivers’ physical/mental health, using the multiple regression analysis with the time-series and cross-sectional data from the 2015-2018 Behavioral Risk Factor Surveillance System (BRFSS). The regression results indicated that the caregiving role could increase the risk of developing physical/mental health problems. Importantly, this study revealed that the characteristics of caregivers and care recipients were significantly associated with caregivers’ physical/mental health outcomes. Especially the results showed that the caregiver support program was the most significant factor linked to caregivers’ physical/mental health. It pointed to the importance of caregiver education and support programs for family caregivers to cope with the stress from providing care or daily assistance. The results also pinpointed which area of support services for informal caregivers would be a priority to enhance. Thus, the public health policymakers should re-evaluate the current long-term care program to establish a more effective caregiving structure, especially caregiver education and support programs for family caregivers, to improve the informal caregivers’ quality of life.       

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

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.

Risk Area 2: Keeping the Caregiver Physically Healthy

2021 ◽  
pp. 29-30
Author(s):  
Louis D. Burgio ◽  
Matthew J. Wynn
Keyword(s):  
Mental Health ◽  
Physical Health ◽  
Basic Education ◽  
Healthy Lifestyle ◽  
Health Issues ◽  
Risk Area ◽  
Caregiver Health ◽  
Physical Health Outcomes ◽  
Psychosocial Consequences ◽  
Risk Areas

This chapter describes one of the five risk areas, namely, caregiver physical health. Outcomes in caregiver intervention research commonly have focused on the mental health or psychosocial consequences of caregiving. Caregiving can be a prolonged stressor, however, and caregivers may be at risk for conditions such as high blood pressure or other negative physical health symptoms. This chapter focuses on basic education regarding caregiver health by referring clinicians and caregivers to the Healthy Lifestyle Guide, located in the Appendix. When caregiver health issues are identified through the risk assessment, clinicians can reference this chapter as they create their Action Plans targeting improvement in caregiver physical health.

The stages of driving cessation for people with dementia: needs and challenges

2013 ◽  
Vol 25 (12) ◽  
pp. 2033-2046 ◽  
Author(s):  
Jacki Liddle ◽  
Sally Bennett ◽  
Shelley Allen ◽  
David C. Lie ◽  
Bradene Standen ◽  
...  
Keyword(s):  
Health Professionals ◽  
Early Stage ◽  
Disease Process ◽  
Well Being ◽  
Driving Cessation ◽  
Safe Driving ◽  
Caregiver Support ◽  
People With Dementia ◽  
The Impact ◽  
Community Access

ABSTRACTBackground:The impact of dementia on safe driving is well recognized and is generally accepted that all people with dementia are likely to need to cease driving at some stage in the disease process. Both driving and driving cessation can have poor outcomes for people with dementia and their caregivers in terms of health, safety, community access, and well-being. Although approaches to facilitate better outcomes from driving cessation are being developed, the processes of driving cessation for people with dementia are still not fully understood.Methods:Within a descriptive phenomenological framework, semi-structured interviews were undertaken with key stakeholders, including retired drivers with dementia, family members, and health professionals.Results:Findings from four retired drivers with dementia, 11 caregivers, and 15 health professionals characterized driving cessation for people with dementia as a process with three stages and associated challenges and needs. The early stage involved worried waiting, balancing safety with impending losses, and the challenge of knowing when to stop. The crisis stage involved risky driving or difficult transportation, acute adjustment to cessation and life without driving, and relationship conflict. The post-cessation stage was described as a long journey with ongoing battles and adjustments as well as decreased life space, and was affected by the disease progression and the exhaustion of caregiver.Conclusions:The concept of stages of driving cessation for people with dementia could be used to develop new approaches or adapt existing approaches to driving cessation. Interventions would need to be individualized, optimally timed, and address grief, explore realistic alternative community access, and simultaneously maintain key relationships and provide caregiver support.

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