Friend Caregivers Research Articles

Post-Pandemic Needs of Unpaid Family and Friend Caregivers to Effectively Continue Caregiving Duties in one Northern Ontario Health Authority

Post-Pandemic Needs of Unpaid Family and Friend Caregivers to Effectively Continue Caregiving Duties in one Northern Ontario Health Authority

The Saskatchewan Caregiver Experience Study: Support Priorities of Caregivers of Older Adults.

Population aging is a global phenomenon. Many older adults living with chronic conditions rely on family and friend caregivers. The growing demand for family and friend caregivers underscores the necessity for adequate and effective support services. The Saskatchewan Caregiver Experience Study sought to gather the perspectives of caregivers of older adults and set priorities for caregiver support. An online survey with open-ended questions was employed in this qualitative descriptive study. In this manuscript, we present our findings from the survey question: "What do you think is most important for support in your caregiving role? In other words, what are your top priorities for support?" This survey question received n = 352 responses, evenly distributed across Saskatchewan in urban-large (33%), urban-small/medium (32%), and rural (35%) settings. Support priorities of Saskatchewan caregivers were found to be access to help when they need it; an ear to listen and a shoulder to lean on; assistance in optimizing the care recipient's health; having healthcare professionals that care; and improved policies, legislations, and regulations. Services and interventions that assist caregivers are more likely to be accessed and utilized when caregivers are given the opportunity to identify their own support priorities. This study has the potential to inform health and governmental systems to support caregivers of older adults provincially within Saskatchewan, nationally in Canada, and in a global context.

Effects of a communication skills training program to improve capacity to engage in advance care planning in caregivers of patients with malignant gliomas

Abstract Background: Family and friend caregivers play a critical role in advance care planning (ACP) discussions, which are difficult but necessary to carry out patients' goals of care. This role is particularly important among caregivers of patients with malignant gliomas (MGs), who are often tasked with quickly taking responsibility for healthcare communication. We developed and evaluated the feasibility, acceptability, and preliminary effects of a virtual communication skills training program to equip caregivers of patients with recurrent MGs with skills to navigate ACP conversations with patients and healthcare providers. Methods: Our 2-hour communication skills training combined a series of didactic exercises with roleplay scenarios and follow-up coaching through a booster call conducted 2 weeks after training completion. Caregivers were randomized to receive either the communication skills training or enhanced usual care (EUC), which included screening and the provision of targeted referrals. Assessments were completed at baseline (T1) and at 2 (T2) and 5 (T3) months of follow-up. Results: A total of 34 caregivers enrolled and were randomized, of whom 19 completed the T2 and 18 completed the T3 assessment. 10 of the 13 caregivers who completed the training participated in interviews at T2 about their experiences and perceived benefits of participation. At T3, results indicated a strong effect size for reduced anxiety and distress and increased preparedness for death in caregivers who received the intervention relative to EUC. Participants reported that the training helped them feel confident initiating ACP conversations, validated in their fears about death, and helped them feel supported and less alone. Conclusion: Despite the challenges of recruiting a highly distressed group of caregivers, there were notable benefits of our communication skills training. Additional larger trials are needed to rigorously evaluate the efficacy of the training program and those that include caregivers of patients with other sites and stages of cancer to determine the generalizability of findings.

Challenges Reported by Family and Friend Caregivers to Older Adults in the Saskatchewan Caregiver Experience Study

The Saskatchewan Caregiver Experience Study sought to map the experiences of family and friend caregivers of older adults in the Canadian province of Saskatchewan. This study aimed to capture the lived experiences of these caregivers through a qualitative survey in June and July of 2022. This manuscript analyzes responses from 354 participants to the question: “What is the most challenging aspect of being a caregiver?” An inductive content analysis approach was taken to analyze the data. We identified key challenges related to caregiving in Saskatchewan, Canada, including exhaustion, balancing personal life, navigating complex systems, self-doubt, and caregiving from a distance. Participants emphasized the need for targeted support and interventions to assist them in their caregiving role. Participants’ experiences reflect a need for more supportive measures in healthcare and policy, especially considering the unique demographic and geographic context of Saskatchewan. A paradigm shift is needed toward supporting caregivers to allow older adults to age in place, rather than relying on institutions and care facilities. In the global context, these findings align with the need for culturally sensitive and region-specific support systems, addressing the universal aspects of caregiving.

"When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids": a qualitative exploration of patient values following left ventricular assist device implantation.

Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. Interviewed patients (n = 27) were 30-76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients' values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping.

Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol

BackgroundPalliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers.MethodsA randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a “Peer-to-peer session”, two “Get-apart sessions” and online sessions. The “Peer-to-peer session” and the “Get-apart sessions” will be discussions about topics suggested by participants. The “Get-apart sessions” will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance.DiscussionThis study aims to demonstrate the impact of integrating palliative care into the PR education program.Trial registrationThe trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

Increased Care Provision and Caregiver Wellbeing: Moderation by Changes in Social Network Care Provision.

Previous research links increased care provision to worse wellbeing among family and friend caregivers, both before and during the coronavirus disease 2019 (COVID-19) pandemic. We expand on this by incorporating data on caregivers' social networks and exploring the relationships between own and network changes in care during the pandemic and caregiver wellbeing. We use nationally representative data from 1,876 family and friend caregivers in the first wave of our Care Network Connections over Time study (fielded 12/17/2020-1/4/2021) who had provided care continuously since before the COVID-19 pandemic began. Caregivers were asked about the amount of care that they and each member of their social networks were providing at the time of the survey relative to before the pandemic. We use multivariate regression models to examine the associations between five caregiver wellbeing outcomes and changes in care, and explore the moderating role of networks' changes in care. Among caregivers who had provided care since prior to the pandemic, most increased (42.0%) or maintained the same (40.8%) care. Their networks also typically increased (33.4%) or maintained (46.5%) care. Increasing one's own care provision was associated with higher levels of anxiety, depression, loneliness, and emotional difficulty than maintaining stable care. Among those who increased care, these levels were highest when the network also increased or decreased care. Increased care provision was most strongly associated with poor caregiver wellbeing in contexts where caregivers' social networks also changed care provisions. Supports for caregivers undertaking additional care tasks should take into account caregivers' networks.

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study.

Policies and services for older adults are increasingly focused on living in the community, rather than relying on institutions. A total of 70-80% of community care for older adults is provided by family and friend caregivers. With Canada's aging population, the number of caregivers to older adults is growing. The purpose of this paper is to describe the research methodology that was employed in the Saskatchewan Caregiver Experience Study. The methodology was used to map the experiences and gather perspectives of caregivers in Saskatchewan and to identify their priority support needs. Qualitative description was the approach in this study. An online qualitative survey was administered via SurveyMonkey and distributed via Facebook and community newsletters. The survey collected caregiver demographics and asked three open-ended questions regarding: (1) the challenges that caregivers experience; (2) the positive aspects of caregiving; and (3) the support needs and priorities of Saskatchewan caregivers. A fourth question where caregivers could freely express any other experiences or perspectives was included. Content analysis was the method used for data analysis. 355 individuals met the inclusion criteria for this study. Participants were evenly distributed amongst urban-large, urban-small/medium, and rural settings in Saskatchewan. The average age of caregivers and care recipients were 61 and 83 respectively. This study has implications for research, practice, and policy. By gathering the full spectrum of the caregiver experience in Saskatchewan, this study can help to inform how communities, governments, and our healthcare system can best support caregivers in their role.

Co-designing action-oriented mental health conversations between care providers and ageing Canadians in the community: a participatory mixed-methods study protocol

IntroductionThe mental health of ageing Canadians is a growing concern, particularly post-pandemic. Older adults face systemic ageism and mental health stigma as pervasive barriers to seeking needed mental health support,...

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

FINANCIAL DIFFICULTY, HEALTH BEHAVIORS, AND MENTAL HEALTH OF FAMILY CAREGIVERS DURING THE COVID-19 PANDEMIC

Abstract The COVID-19 pandemic greatly burdened family caregivers in the United States and across the globe as they and their family members often suffered from the COVID-19 virus and its societal implications, like social isolation and a shift to remote healthcare. This study examines the impact of the COVID-19 pandemic on financial difficulty, health behavior, and mental health outcomes among family caregivers for older adults across the intersectionality of gender and race. Using the 2020 National Health and Aging Trends Study (NHATS) COVID-19 supplement for Family Members and Friends, our sample included adult family or friend caregivers of Medicare beneficiaries aged 65 or older in the US (N = 2,062). We modeled the interrelationships between financial difficulty, health behaviors, and mental health outcomes using a structural equation model. The results indicate that within the intersectionality framework, during the pandemic, female caregivers reported less vigorous activity, more changes in walking and sleeping patterns, and more eating and watching TV than before the pandemic compared to male counterparts. Compared to white caregivers, during the pandemic, non-white caregivers showed less vigorous activity and more changes in walking, sleeping, I eating, and TV watching patterns than before the pandemic. Financial difficulty was significantly and positively associated with negative mental health. Active behavior was significantly and negatively associated with negative mental health. Health professionals should consider the interrelationships between sociodemographic factors, physical activity levels, and financial difficulties that have come to light during the pandemic when designing future programs and policies to improve family caregiver health.

CommunityRx, a social care assistance intervention for family and friend caregivers delivered at the point of care: two concurrent blinded randomized controlled trials

BackgroundCommunityRx is an evidence-based social care intervention delivered to family and friend caregivers (“caregivers”) at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago’s South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers.Methods and findingsCommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment.DiscussionOur asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research.Trial registrationClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).

Existential distress in family caregivers: scoping review of meaning-making interventions

ObjectivesFamily and friend caregivers often feel overwhelmed by and ill-prepared for their responsibilities. Many feel helpless living with uncertainty about the outcome of the patient’s illness, which leads to existential...

Coping Behaviors and Health Status during the COVID-19 Pandemic among Caregivers of Assisted Living Residents in Western Canada.

To examine the prevalence of coping behaviors during the first 2 waves of the COVID-19 pandemic among caregivers of assisted living residents and variation in these behaviors by caregiver gender and mental health. Cross-sectional and longitudinal survey. Family/friend caregivers of assisted living residents in Alberta and British Columbia. A web-based survey, conducted twice (October 28, 2020 to March 31, 2021 and July 12, 2021 to September 7, 2021) on the same cohort obtained data on caregiver sociodemographic characteristics, anxiety and depressive symptoms, and coping behaviors [seeking counselling, starting a psychotropic drug (sedative, anxiolytic, antidepressant), starting or increasing alcohol, tobacco and/or cannabis consumption] during pandemic waves 1 and 2. Descriptive analyses and multivariable (modified) Poisson regression models identified caregiver correlates of each coping behavior. Among the 673 caregivers surveyed at baseline, most were women (77%), White (90%) and age ≥55years (81%). Alcohol (16.5%) and psychotropic drug (13.3%) use were the most prevalent coping behaviors reported during the initial wave, followed by smoking and/or cannabis use (8.0%), and counseling (7.4%). Among the longitudinal sample (n= 386), only alcohol use showed a significantly lower prevalence during the second wave (11.7% vs 15.1%, P = .02). During both waves, coping behaviors did not vary significantly by gender, however, psychotropic drug and substance use were significantly more prevalent among caregivers with baseline anxiety and depressive symptoms, including in models adjusted for confounders [eg, anxiety: adjusted risk ratio= 3.87 (95% CI 2.50-6.00] for psychotropic use, 1.87 (1.28-2.73) for alcohol use, 2.21 (1.26-3.88) for smoking/cannabis use). Assisted living caregivers experiencing anxiety or depressive symptoms during the pandemic were more likely to engage in drug and substance use, potentially maladaptive responses. Public health and assisted living home initiatives that identify caregiver mental health needs and provide targeted support during crises are required to mitigate declines in their health.

Fit for Duty: Lessons Learned from Outpatient and Homebound Hematopoietic Cell Transplantation to Prepare Family Caregivers for Home-Based Care

In the past decade, the demand for home-based care has been amplified by the Coronavirus disease 2019 pandemic. Home-based care has significant benefits for patients, their families, and healthcare systems, but it relies on the often-invisible workforce of family and friend caregivers who shoulder essential health care responsibilities, frequently with inadequate training and support. Hematopoietic cell transplantation (HCT), a potentially curative but intensive treatment for many patients with blood disorders, is being increasingly offered in home-based care settings and necessitates the involvement of family caregivers for significant patient care responsibilities. However, guidelines for supporting and preparing HCT caregivers to effectively care for their loved ones at home have not yet been established. Here, informed by the literature and our collective experience as clinicians and researchers who care for diverse patients with hematologic malignancies undergoing HCT, we provide considerations and recommendations to better support and prepare family caregivers in home-based HCT and, by extension, family caregivers supporting patients with other serious illnesses at home. We suggest tangible ways to screen family caregivers for distress and care delivery challenges, educate and train them to prepare for their caregiving role, and create an infrastructure of support for family caregivers within this emerging care delivery model.

CARING FOR THOSE WHO CARE: EVALUATION OF A COMPREHENSIVE CULTURAL COMPETENCY TRAINING CURRICULUM

Abstract By 2030, nearly 3 in 10 older Americans will identify as a member of a diverse or underrepresented group. To better support diverse, aging communities and help professionals meet the growing needs of family and friend caregivers, the Diverse Elders Coalition developed a comprehensive cultural competency training curriculum that, in the first year of development, engaged over 2,500 healthcare and social service providers. To evaluate the short and long-term impact of the training curriculum, this paper focuses on two types of anonymous evaluations that were electronically distributed to training attendees: 1) Subjective knowledge post-tests (n=162), and 2) 3-month post-training follow-ups (n=232). Majority of participants identified as female, White/Caucasian, and earned at least a college degree. Upon completion of the trainings, participants reported improved subjective knowledge about diverse communities, more confidence and preparedness to meet diverse caregivers’ needs, and also indicated that because of the training they would engage in a variety of diversity related actions (e.g., use more inclusive language, share training resources with colleagues, attend additional diversity trainings). At the 3-month follow-up, 91.8% of respondents reported they engaged in two or more diversity related actions since attending the training. Respondents (73.8%) also indicated that their organization engaged in one or more diversity-related actions since attending the training (e.g., provided staff additional diversity-related trainings, translated materials). Discussion will focus on ways to improve healthcare and social service providers’ advocacy efforts and awareness surrounding the needs of older adults and caregivers from diverse communities.

COMPETENCY DEVELOPMENT FOR A PROGRAM TO SUPPORT CAREGIVERS OF OLDER ADULTS WITH DEMENTIA: A MODIFIED E-DELPHI METHOD

Abstract Nav-CARE is a program that utilizes volunteer navigators to support older adults with life-limiting illnesses who are living in the community. Currently, Nav-CARE is being adapted and expanded to support family and/or friend caregivers of older adults with dementia. In order to begin the process of adapting this program a modified e-Delphi method was utilized. This method consisted of presenting three sequential questionnaires to an expert panel (n=50) of individuals with knowledge of and/or experience in caregiving, dementia, volunteerism and/or navigation. Consensus was established regarding the importance of various caregivers’ needs and the competencies volunteer navigators require in order to meet these needs. This process resulted in a final list of 46 caregivers' needs and 41 volunteer navigator competencies. Two key findings suggest that there is a crucial need for increased access to respite, which influences the caregivers' ability to benefit from additional supports, and that dementia stigma is prominent, which negatively impacts the caregiving experience. Additional findings highlight the need for increased knowledge of dementia among providers, caregivers, and community members, the importance of establishing strong volunteer navigator-caregiver relationships, and the need to balance the agency of older adults living with dementia and their caregivers. Findings from this study informed the development of training curriculum for volunteer navigators, and will be used to guide the ongoing development of the adapted Nav-CARE program.

HEALTH BEHAVIORS AND MENTAL HEALTH OUTCOMES OF INFORMAL CAREGIVERS DURING THE COVID-19 PANDEMIC

Abstract Differences exist in health behaviors and mental health outcomes between spouse and adult children caregivers and between caregivers of individuals with or without dementia. We aimed to examine the change in health behaviors and mental health outcomes of informal caregivers of older adults during the COVID-19 pandemic and explore disparities based on caregiver relationship and care recipient. Using the 2020 National Health and Aging Trends Study (NHATS) COVID-19 supplement for Family Members and Friends, our sample included adult family or friend caregivers of Medicare beneficiaries aged 65 or older in the US (N = 2,062). We used ANOVA and two-way ANCOVA to assess the effects of the pandemic, caregiver relationship type, and care recipient condition (dementia vs. non-dementia) on seven health behaviors and two mental health outcomes. We performed all post hoc analyses using Bonferroni corrections controlling the covariates age, gender, marital status, education, and self-reported health of the caregiver. Compared to before the pandemic and to spouse caregivers, adult children caregivers reported: 1) significantly less time walking and significantly more time watching TV or online programs, and 2) a significantly higher level of emotional distress and depressive symptoms. Compared to caregivers for people without dementia, those who provide care for people with dementia experienced less sleep and a higher level of depressive symptoms during the pandemic than before the pandemic. Health professionals should consider the impact of COVID-19 and the vulnerability of adult children caregivers and caregivers of individuals with dementia when designing and delivering health and wellness programs.

Caring for older men and women: whose caregivers are more distressed? A population-based retrospective cohort study

BackgroundTo our knowledge, no population-based studies have examined whether family or friend caregivers of men and women differ in their experience of distress over time. Thus, we aimed to describe, on a population-level and longitudinally, how older men and women care-receivers differed in their health and care needs, compare their caregivers’ distress trajectories, and identify factors that contribute to the observed differences.MethodsThis is a population-based, retrospective cohort study using routinely collected data. We examined longitudinally 485,407 community-dwelling Ontario residents, aged over 50 years, who have received at least one Residential Assessment Instrument-Home Care (RAI-HC) assessment between April 2008 and June 2015. Descriptive analyses were performed on the demographic characteristics, health profiles, and care needs of men and women. We also compared their caregivers’ baseline and one-year change in distress status. Logistic regressions were performed to examine if the effect of gender on caregiver distress is reduced after controlling for care-receiver’s health and functional status as well as their caregiver’s kinship and co-residence status.ResultsMen (39.5% of our cohort) were frailer, required more care, were mostly cared for by their spouses (52%), and mostly lived with their caregiver (66%). In contrast, women (60.5%) were more likely cared for by their child/child-in-law (60%), less likely to live with caregivers (47%), and received less care. Caregivers of men were more likely to be distressed at baseline (27.7% versus 20.4% of women caregivers) and remain distressed (74.6% versus 69.5%) or become distressed (19.3% versus 14.3%) throughout the year. In logistic regression modelling, the effect of care-receiver’s gender on caregiver distress is reduced from an unadjusted odds ratio of 1.49 (95% CI: 1.47–1.51) to 1.17 (95% CI: 1.15–1.19) when care-receiver’s health and caregiving factors are controlled for.ConclusionOlder men and women differed in health and care needs. Caregivers, especially those caring for men, were often distressed and remained so through time. These results highlight the need for policies that account for the differential care needs and caregiver profiles of men and women in order to offer targetted and appropriate support.

Experiences of caregivers of community-dwelling older persons with moderate to advanced dementia in adapting the Namaste Care program: a qualitative descriptive study

BackgroundGlobally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family members and friends to complete their daily activities. Family and friend caregivers, however, often report a lack of preparation for their caregiving role. There are few psychosocial programs that can be delivered by caregivers of community-dwelling older persons with moderate to advanced dementia. Namaste Care is a psychosocial intervention, predominantly used in long-term care, to improve the quality of life of persons with advanced dementia. Namaste Care provides multisensory stimulation for persons with dementia through meaningful activities such as music, massage, aromatherapy, and nutrition. There have been limited attempts at adapting Namaste Care for use by caregivers in the community.There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement so that strategies can be put in place for a positive experience. The purpose of this study is to explore the experiences of caregivers who participated in workshop sessions to adapt Namaste Care for community-dwelling older persons with moderate to advanced dementia.MethodsA qualitative descriptive design was used. Six caregivers residing in Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) that were guided by the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework. Caregivers completed individual post-workshop interviews. Experiential thematic analysis was used to analyze interviews and post-interview researcher notes.ResultsKey findings were that caregivers had a positive experience in adapting Namaste Care by learning how to improve their caregiving skills and being supported to engage in research through multiple facilitators such as flexible scheduling and an inclusive and respectful environment. Having designated time for discussions between caregivers was perceived as important to forming partnerships within the group to support co-creation of knowledge.ConclusionFindings support the need to improve caregiver research engagement processes by ensuring that caregivers can benefit through learning opportunities and discussions and empowering caregivers to value their contributions in adapting interventions.