Lesley Charles, MBChB, COE, CAC, CCFP1, Suzette Brémault-Phillips, PhD2, Jasneet Parmar, MBBS, MCFP(CAC)1, Melissa Johnson, MSc3, Lori-Ann Sacrey, PhD4
1Division of Care of the Elderly, Department of Family Medicine, University of Alberta, Edmonton, AB
2Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB
3Network of Excellence in Seniors' Health and Wellness, Edmonton, AB
4Faculty of Medicine and Dentistry, University of Alberta, Edmonton, ABDOI: https://doi.org/10.5770/cgj.20.252
ABSTRACT
Purpose of the Study
The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them.
Design and Methods
A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities.
Results
Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving.
Implication
A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign.
Key words: caregivers, seniors, comorbidities
Canada’s population is aging, with the proportion of individuals aged 65 and over anticipated to increase from 15.3% in 2013 up to 27.8% in 2063, and those aged 80 and over to increase from 1.4 million to 4.9 million between 2013 and 2045 (10% of the total Canadian population).(1) Simultaneously, more Canadians are living with chronic diseases, including dementia, with a third of those aged 80 years and older having at least four chronic conditions.(2) In 2011, 14.9% of Canadians aged 65 and older were living with Alzheimer’s disease and other dementias; this figure may double by 2031.(3)
Family members and friends are often relied upon to help them continue to live and remain in their communities.(4) Family caregivers provide informal unpaid care.(5) Recognized as the backbone of the health care system,(2,6,7) it is estimated that 3.8 million family caregivers care for seniors with short- or long-term health conditions,(8) and nearly half a million care for someone with dementia.(4) Caregivers of individuals with dementia are often older, likely to be caring for parents (in-laws), and living within commuting distance (< 3 hours by car).(4) According to a 2012 Statistics Canada survey,(6) of the 8.1 million Canadians identified as carers (44% of whom are aged 45–64 years), 10% provide more than 30 hours of support a week, many are working (60%), and others are caregiving while child-rearing (25%).(6)
Family caregivers are increasingly overburdened,(2,6,7) with 50% reportedly being tired and anxious, and 20% in need of financial assistance.(6) Those providing greater than 21 hours of care per week, or caring for persons with depression, cognitive decline, behavioural change, or terminal conditions, are at higher risk.(7,9) There is increasing evidence that caregiving is being provided at significant physical, emotional, and financial cost to caregivers(2,6,7,10) who are often overwhelmed by the stresses of caregiving and competing priorities. Family caregivers can experience deterioration of their health, social isolation, loss of income, family conflict, and distress.(7,11,12) Compared to other caregivers, those caring for someone with dementia (generally spending 14 hours/week caregiving) are more greatly impacted regarding their health, social, and financial well-being,(4) with up to 75% developing psychological illnesses and 15–32% experiencing depression.(5) This strain is anticipated to intensify due to an aging population.(4,13,14)
A recent Canadian study estimates the costs of unpaid caregiving at $25 billion.(10) Given the essential role of caregivers within the health-care system, supporting family caregivers has become a national public health priority. Multiple reports, including the Health Council of Canada’s (2012) Seniors In Needs, Caregivers In Distress report, identify the need to support caregivers and recognize their indispensable contribution in the sustainability of the health-care system. (2,6,7,10) The provision of adequate evidence-informed family caregiver supports should be an important part of any regional, provincial, national, or international strategy for the care of older adults or those with dementia.(15) Caregivers require multi-faceted support to foster resilience and ensure that they can continue to provide care while maintaining their own well-being. There is, however, a gap between available and known supports to help caregivers. A better understanding of caregiver expectations and ways to foster their resilience is needed.
To that end, a CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was convened to bring together individuals from various organizations and sectors. The anticipated outcomes included gaining a greater understanding of the current state of support for family caregivers, identifying what is needed provincially, nationally, and internationally to improve service provision and caregiver support, and informing research priorities. The focus of this paper is specific to caregiver support for seniors with complex needs— that is older adults with chronic conditions and how they interact with each other and the processes of aging through biomedical, psychological, and social mechanisms.(16)
The purpose of this paper is to: 1) describe the experiences and challenges of supporting family caregivers of seniors with complex health needs from the perspective of participants, and 2) outline research priorities aimed at supporting these family caregivers. The planning meeting employed an integrated knowledge translation approach guided by the knowledge-to-action cycle.(17) Modified World Café(18) and stakeholder engagement were used to gather participant insights and feedback.
Participants were invited via email by key stakeholders from organizations and groups, such as Covenant Health, Alberta Health Services, Government of Alberta, international universities, Alberta Caregivers Association, and the Alzheimer’s Society. The conference was attended by 120 stakeholders, including caregivers, researchers, health-care providers, members of community organizations, government officials, and policy and decision makers in Edmonton, Alberta on April 14–15, 2014. Representatives from a number of key national institutions attended, along with international research experts and stakeholders (e.g., World Health Organization, Stanford University). Participants engaged in interactive discussions concerning complex needs (n = 76; hereafter ‘target group’) on Day 1, and implementation strategies and research priorities to address gaps and barriers on Day 2. This group was comprised of 9 caregivers, as well as 59 health-care workers, 5 participants from provincial bodies, and 3 from community organizations, some of whom also identified as caregivers. Two of the participants were from outside of Alberta. The groups were intentionally comprised of participants holding diverse perspectives (caregivers, health-care providers, policy and decision makers, and community organizations) so that ideas shared might co-mingle, and inform and build upon each other, thereby enabling the group to co-produce knowledge. As a result, identification of the source of a particular concept or statement was not emphasized.
The conference utilized an integrated knowledge translation approach that was in keeping with the evidence-funnel within the knowledge-to-action cycle.(17) Data were collected from conference participants on each day of the conference. Day 1 began with summary presentations of research evidence specific to support for caregivers of seniors in the three target populations (caregivers of seniors with dementia, end-of-life care, or complex health needs). A modified World Café technique(18) of 90-minute duration was then utilized to elicit experiences and gather informative data from participants. This involved dividing participants (n = 120) into three groups aligned with each of the target populations. Participants self-identified and registered for each group. The complex needs (n = 76) group was further subdivided into groups of 10–12 people who rotated over a 60-minute period through three topic-specific table discussions focused on current issues related to challenges, barriers, resources, facilitators, and desired directions to the provision of caregiver supports. Each of the table discussions was facilitated by an experienced moderator accompanied by a scribe. Participants also penned ideas on post-it-notes, cue cards, or table coverings, leaving them behind for the next group to build upon. After 60 minutes, table moderators provided a 30-minute summation of the collective discussion from the three discussion rounds for each target population. All participants then reconvened and World Café results from each of the three target groups were shared over an hour-long session.
On Day 2, participants were divided into the three target population groups who engaged in 6 hours of discussion regarding research priorities. Again, 76 participants discussed support for caregivers of seniors with complex needs. All participants reconvened for a 1-hour discussion regarding research priorities across the each target populations. Ethics approval was obtained from the University of Alberta Research Ethics Board.
Notes from the scribes, together with those on post-it-notes, cue cards, and table coverings, were collated for the purpose of analysis and writing of a final report for the funding agency. Qualitative data analysis was conducted by four members of the research team (MJ, SBP, JP, LC), using inductive content analysis guided by qualitative description.(19,20) NVivo 9 software(21) was utilized to support analysis of the qualitative data obtained over the two days. Themes were developed based on keywords; subthemes offered more clarification. To ensure the integrity of the research process, four aspects of trustworthiness—credibility, transferability, dependability, and confirmability, detailed in Lincoln and Guba’s model(22)— were addressed throughout the analysis processes. As data were collected in the context of an intentionally heterogenous group of caregivers and system representatives holding diverse perspectives and at times dual roles, participant responses were analyzed as a single unit of analysis representative of their co-produced knowledge. This unit of analysis did not differentiate the approaches or findings presented by specific participants or participant subgroups.
Group discussions on Day 1 highlighted caregiver experiences, and facilitators and barriers/gaps to support for caregivers. Emphasis was placed on the following caregiver experiences: 1) managing a multitude of tasks which can compromise caregivers’ ability to address personal needs, 2) changing roles and obligations, and the shift away from traditional family structures which is having an impact on caregiving, and 3) the significant financial and occupational impact of caregiving (see Table 1).
TABLE 1 Supporting family caregivers of seniors with complex needs: caregiver experiences
Themes associated with facilitators and barriers/gaps to provision of support for caregivers were also identified (see Table 2). Facilitators included: 1) health-care and community-based resources are accessible, 2) health-care providers and agencies are available and well-intended, and 3) caregivers are recognized by the system. Barriers/gaps included: 1) caregivers lack knowledge and understanding of what is needed and from whom/where to obtain it, 2) communication and information is lacking causing caregivers stress and frustration, 3) challenges with system navigation exist due to fragmentation and constant change, 4) economic barriers exist at the individual and system levels, and 5) policies can create barriers.
TABLE 2 Supporting family caregivers of seniors with complex needs: facilitators/barriers to the provision of caregiver support
A number of recommendations were identified by participants to inform service delivery and research priorities. These included: 1) assisting caregivers in self-identifying and seeking support, 2) formalizing caregiver supports, 3) centralizing resources, 4) making system navigators available, and 5) preparing the next generation for caregiving (see Table 3).
TABLE 3 Recommendations: Enhancing support for family caregivers of seniors with complex needs
Day 2 recommendations for further research highlighted the need for: 1) literature reviews, 2) distillation of research priorities, and 3) development of an outline of a five-year program of research (Table 4).
TABLE 4 Recommendations for further research
Most seniors choose to live at home for as long they are able. (7) To help them do so, however, support from caregivers, which impacts all aspects of the carer’s life and can lead to caregiver burnout, is often required. This was identified in both the literature and conference findings regarding the Caregiver Experiences Theme #1, managing a multitude of tasks which can compromise caregivers’ ability to address personal needs.(2,4–7,10–12) Unfortunately, caregivers rarely self-identify, restricting the availability of timely supports that could prevent burnout. Attention needs to be placed on the needs of caregivers and provision of support that is rooted in respect, right to choose, and self-determination.(23)
There is increasing recognition that families and caregivers have assumed significant caregiving responsibilities,(24) necessitating the provision of adequate evidence-based support for caregivers. This was echoed in Facilitator Theme #3, caregivers are recognized by the system. A future goal is the inclusion of regional, provincial, national, and international strategies to improve outcomes for both older adults and their family caregivers.(15) Hallberg and Kristensson(25) noted in 2004 that frail, older people are at the intersection of divergent systems, including the acute care system, long term care system, and family caregiving. With acute and chronic complex health conditions affecting multiple body systems, a specialty approach to health care and a fragmented system fail to address the interdependency of physical, psychosocial, and functional health.(25) Fragmentation of the system was evident in Barriers Theme #3, challenges with system navigation exist due to fragmentation and constant change. As older adults with complex needs require care for an extended duration of time, a review of the capacity of the current health-care system to respond appropriately to the needs of older adults with complex needs and their caregivers is warranted. This is in keeping with findings from the conference, in that a holistic approach and preserved continuity of care are required to help older persons maintain quality of life and remain at home with as few interruptions as possible.
The capacity and resilience of family caregivers could be significantly improved through a variety of strategies. For example, new findings from our research recommendations include 1) assisting caregivers in self-identifying and seeking support, and 5) preparing the next generation for caregiving. In adopting interventions, however, it is essential to engage caregivers in designing, planning, and implementing them to avoid missing opportunities. As an example, a host of very rich literature describes family caregivers and their challenges,(24) with an emphasis on the importance of seeking patient and carer input when designing new case management programs. (26) There is the potential for better ways to foster case management–caregiver inclusion so that caregivers can maintain a supportive presence and improve their own outcomes.(27) Access to coaches, mentors, education, and training would also be advantageous. Telephone support groups, such as those offered through the Alzheimer Society, have resulted in a significant decrease in burden and depression, together with a significant increase in social support and knowledge among adult child caregivers (but not among spousal caregivers).(28) Health Education Programs, multi-component group interventions that focus on problem-based coping strategies, education, and support for caregivers, may also reduce caregiver burden.(29,30) For example, caregivers of frail older adults who receive a multi-component, interdisciplinary intervention reported overall better health and self-esteem than those in a control group.(31) Finally, the importance of centralizing resources and supports, providing supports to navigate through the health-care system, and advocating for policy change and financial supports for caregivers cannot be over-stated.
The conference utilized a purposeful integrated knowledge translation approach that was in keeping with the evidence-funnel within the knowledge-to-action cycle. The research presentations thus may have influenced participant responses in the discussions. Further, as the data were collected and analyzed as a single unit of analysis that intentionally facilitated co-production of knowledge and did not differentiate participant subgroups by role or geographic representation, the findings are limited in the specificity they offer about or to any one participant subgroup.
Future research was highlighted to help shape a program of research in support of family caregivers of persons with complex needs. Research into case management, support groups, and health education programs is particularly warranted. Regarding case management, research needs to determined specific ways in which case managers can help caregivers, given that a systematic review has reported the efficacy of case management in decreasing caregiver burden and increasing caregiver satisfaction.(32) Research assessing the introduction of health education programs with school-and college-age students to better prepare them for the eventuality of caregiving is also an area of potential research. Another important area of future research is policy change. Consideration of the whole care picture instead of specific acute condition in seniors with complex needs, including the economic impact of caregiving, is warranted.
Family caregivers are an important, but overburdened and under-recognized, group within our health-care system, particularly those of seniors with complex needs. Caregivers require multifaceted supports to ensure that they can continue to provide care while maintaining their own wellbeing. A “one size fits all” model is not functional and collaborative practice will take different forms depending on the practice context, setting, family structure, and nature of the individual’s needs. Such an approach requires that practitioners seek out, integrate, and value, as a partner, the input and engagement of individual/family/community in designing and implementing care/services.
Understanding of the psychosocial and environmental context, which builds on the resilience of the older adult-family caregiver unit, is required to address the needs of community-dwelling older adults. There is a sense that we are spending more on health, social, home-based, and community services than ever before, yet there is the recognition that older adults and their caregivers still find it challenging to access the right services, in the right place, at the right time. The success of interventions will depend on the degree of caregiver involvement, the extent to which programs are individualized, the accessibility of information and coaching, the availability of system navigation supports, and the type and impact of the behaviour of the care recipient. Linkages need to occur amidst such programs in order to provide the best services to meet the unique needs of caregivers. Critical success factors in seniors’ health services redesign include gaining a better understanding of family caregiver expectations and ways to foster caregiver resilience and strength so that they can maintain a supportive presence. The results of this meeting will help shape future research and interventions regarding support for family caregivers. Many have already been developed.
A discovery toolkit for health-care providers supporting family caregivers was produced as an output from the conference. An inventory of caregiver resources has been created and this is being disseminated widely for caregivers. A caregiver education module for case managers has been introduced in the Building Case Management of Dementia Capacity in Homecare Initiative in Edmonton Zone which includes assessment of caregiver needs and referrals to community supports. This will be spread across continuing care under the Continuing Care Dementia strategy. A Covenant Health Caregiver symposium on ‘Caregiver Supports in Acute and Continuing Care’ was held August 31, 2016. A report is being prepared of findings from that symposium which will suggest future directions. A grant has been obtained to synthesize the proceedings of the symposium, and engage acute and continuing care facilities in providing supports for family caregivers of seniors. The findings of this project have also had reach into primary care with a Primary Care Network Geriatrics Hub research project which has included screening of caregivers for risk factors and education of staff on caregiver-related issues.
The authors declare that no conflicts of interest exist.
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Canadian Geriatrics Journal, Vol. 20, No. 2, June 2017