Participants

A two-day meeting was attended by 123 individuals (24 caregivers [18 female; six male]; 11 policy makers; 23 health administrators/managers; 24 researchers/academics; 29 health care professionals; 12 from community organizations). The Alzheimer Society of Alberta and the Northwest Territories (ASANT) and the Alberta Caregivers Association recruited participants to attend the meeting from within their family caregiver communities. Administrators, employees, and board members from these two associations also participated. Additionally, researchers, clinicians, health care administrators, and policy makers associated with a number of key national institutions attended, along with international research experts and stakeholders (e.g. WHO, Stanford University). Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. Meeting participants self-identified which of the three discussion groups they wished to participate in, and, when individuals identified more than one group, the meeting organizers allocated participants in an effort to balance discussion group size and expertise.

Agenda

The agenda for day 1 of the meeting included an evidence-based review of published literature, plenary sessions, and interactive discussions. Focusing on the evidence-funnel within the knowledge-to-action cycle (Graham et al., Reference Graham, Logan, Harrison, Straus, Tetroe, Caswell and Robinson2006), the meeting began with summary presentations of research evidence specific to the target populations. In order to prepare the evidence summary, a literature search was conducted by JM of Ovid Medline, EMBASE, PubMed, and CINAHL from inception to October 2013 focused on English-language articles and identifying systematic reviews or randomized controlled trials of caregiver interventions or outcomes. Key search terms varied by the targeted caregiver population but included “caregiver”, “carer”, “support, “interventions”, “dementia”, “terminal care”, “end-of-life care”, “palliative care”, “frailty”, and “frail older adult” when relevant. Additionally, the references of key articles were searched to identify relevant articles. The search identified 314 citations that were reviewed by JM (191 related to online supports for caregivers of persons with dementia; 67 related to caregivers of persons in the terminal phase of illness; 56 focused on supports for caregivers of frail seniors with complex health needs); 42 articles were included in the final review (11 related to online supports for caregivers of persons with dementia; 21 related to caregivers of persons in the terminal phase of illness; 10 focused on supports for caregivers of frail seniors with complex health needs) (see Table 1).

Table 1: Results of literature review on caregiver supports

Plenary sessions were also delivered by recognized national and international researchers on topics relevant to our three targeted caregiver populations, including research related to online supports for caregivers of seniors with dementia, end-of-life care, and caring for frail seniors with complex health needs. Findings, from three semi-structured focus groups with a total of 23 family caregivers and which were conducted prior to the meeting by research team members in collaboration with ASANT and the Alberta Caregivers Association, were then presented to further explore evidence-to-practice gaps. Methodological details and results of these focus groups have been previously published (Brémault-Phillips et al., Reference Brémault-Phillips, Parmar, Johnson, Tian, Mann, Huhn and Sacrey2016). However, standardized coding techniques were utilized to identify themes. Specifically, the focus groups identified issues related to caregivers’ knowledge, skills, and access to resources. Finally, utilizing a modified World Café technique, meeting participants were divided into three groups to discuss potential facilitators and barriers to providing evidence-informed caregiver supports to the three targeted caregiver populations. The World Café approach was modified by having team member facilitators and scribes present at each table, rather than having a participant remain behind to brief the next round of participants. Further, the discussion rounds decreased in length as the Café continued. However, all discussion rounds provided participants sufficient time to connect ideas, and to contribute new content. The table facilitators recorded major themes identified by participants on poster boards for all participants to see and comment on further, while the table scribes took more detailed notes that were subsequently used to expand on these major themes within this article.

Working from the foundation of information sharing of day one, the second day of the meeting involved a smaller group of individuals interested in further exploring implementation research strategies and interventions that would address the identified gaps and barriers in the three targeted caregiver populations. Although this consisted primarily of researchers and academics, other engaged stakeholders such as caregivers (four in total), health care providers, and members from ASANT and the Alberta Caregivers Association also attended day two. One specific focus of day two was to explore potential research collaborations with the WHO in terms of online modules that they were developing for caregivers of persons with dementia. Ethics approval to conduct the meeting and related activities was received from the University of Alberta Research Ethics Board.

Evaluation

Participants were asked to evaluate the meeting. Among the 50 participants who provided written feedback from day one, 92 per cent agreed that the event provided an excellent learning opportunity, 98 per cent agreed that the featured presenters were excellent, and 88 per cent agreed that the event provided a good opportunity for networking. All participants felt that the event was free of commercial bias, and 96 per cent agreed that it was well-organized and worth their time to attend.

Caregivers of Seniors with Dementia

Given the demands placed on family caregivers of persons with dementia, access to support services from the convenience of home is potentially attractive. The growing availability of the internet makes internet-based caregiver supports a potentially viable cost-effective option. Multi-component internet-based caregiver interventions have been shown in several small studies to decrease caregiver perceptions of burden; decrease caregiver stress, anxiety, and depression; and increase caregiver self-efficacy and confidence in decision-making (Bass, McClendon, Brennan, & McCarthy, Reference Bass, McClendon, Brennan and McCarthy1998; Beauchamp, Irvine, Seeley, & Johnson, Reference Beauchamp, Irvine, Seeley and Johnson2005; Casper, Calvitti, Brennan, & Overholt, Reference Casper, Calvitti, Brennan and Overholt1995; Eisdorfer et al., Reference Eisdorfer, Lowenstein, Rubert, Arguelles, Mitrani and Szapocznik2003; Godwin, Mills, Anderson, & Kunik, Reference Godwin, Mills, Anderson and Kunik2013; Mahoney, Tarlow, & Jones Reference Mahoney, Tarlow and Jones2003; Marziali, & Donahue, Reference Marziali and Donahue2006; Powell, Chiu, & Eysenback, Reference Powell, Chiu and Eysenbach2008). Based on this, both ASANT and the WHO were interested in supporting caregivers of persons with dementia using online resources and, hence, the reason for focusing on internet supports at this meeting.

Internet interventions provide an opportunity for interventions that can be tailored to individuals and their changing needs. Therefore, development and implementation of an online support tool for caregivers of persons with dementia was explored at day two of the meeting. Specifically, the tool could incorporate interactive caregiver self-efficacy and self-management modules, developed with support of the WHO (http://www.who.int/mental_health/mhgap/evidence/dementia/en/), into a local web-based resource such as ASANT (www.asantcafe.ca).

Some of the key facilitators that participants identified for an online caregiver support tool included the potential to have questions answered at any time, to build a sense of community, and to validate individuals who are isolated due to geography and/or stigma. This tool could meet the needs of both primary caregivers and other family caregivers. The evolution of technology makes this an increasingly popular form of support and is a way to consolidate information. Potential barriers that were identified included challenges related to accessibility and usability across diverse groups of end users, and developing a tool that is adaptable to changing technology and evidence. Other issues included (a) ensuring website credibility and maintenance; (b) involving caregivers (end users) in development and evaluation; (c) considering user privacy issues; (d) providing both health care professional and caregiver perspectives; (e) considering information needs across the disease continuum; (f) making optimal use of existing resources; and (g) aligning with the formal health care system.

Caregivers in End-of-Life Care

Participants identified that interventions to improve outcomes for caregivers of persons in the terminal phase of illness are challenging. The literature suggests this is because of the limited period associated with advanced disease and the attempts family caregivers make to try to prepare for the eventual death of their family member or friend, while also helping the dying person (Harding, List, Epiphaniou, & Jones, Reference Harding, List, Epiphaniou and Jones2012). However, systematic reviews of studies with this population suggest that caregiver appraisals, coping strategies, and resources have the most impact on positive outcomes (Bee, Barnes, & Luker, Reference Bee, Barnes and Luker2008; Harding et al., Reference Harding, List, Epiphaniou and Jones2012). For example, interventions such as emotional support and advice on coping directed to caregivers result in decreased distress, improved coping ability, and increased caregiver quality of life (Bee et al., Reference Bee, Barnes and Luker2008; Harding et al., Reference Harding, List, Epiphaniou and Jones2012). Evidence provided from randomized-controlled trials suggests that caregiver coping skills interventions lead to decreased burden and increased quality of life in the caregiver, and that psychosocial interventions result in a more positive caregiving experience (Candy, Jones, Drake, Leurent, & King, Reference Candy, Jones, Drake, Leurent and King2011; McMillan et al., Reference McMillan, Small, Weitzner, Schonwetter, Tittle, Moody and Haley2006).

Potential facilitators identified during the meeting for supporting caregivers of persons at the end of life included the development of provincial frameworks for end–of-life care and additional research. Gaps and barriers include the challenges of identifying the population and support needed by caregivers providing end-of-life care, the diversity of this population, and available resources. Identifying the population is a challenge as caregivers of persons at the end of life include those dealing with a variety of advanced diseases, who may or may not access palliative care services, and who are bereaved. Some caregivers have not considered the eventual death of their family or friend, and others do not view death as a natural process, making it difficult to discuss end-of-life issues. It was felt assessments need to identify caregivers at highest risk, as well as the diversity of needs and supports required among caregivers.

Participants identified that current services and resources to support family caregivers of persons in the terminal phase of illness have differing goals. For example, some services reduce the amount of caregiving, while others focus on improving caregiving skills, coping, and problem solving. As well, resources are more limited in rural areas. Participants indicated that the current focus is on providing resources and information to family caregivers and that more attention is needed in building relationships with and supporting caregivers themselves, rather than on supporting caregivers to provide care. It was also suggested that resources need to be flexible, practical, and simple because of the intensity and time demands of caregiving. As well, resources and supports need to focus on the whole illness experience.

Caregivers of Frail Seniors with Complex Health Needs

For this meeting, frail seniors with complex health needs were broadly defined as older adults with multiple medical, functional, and/or psychosocial issues. Studies involving caregivers of frail seniors with complex health needs have demonstrated several benefits of both caregiver and care recipient interventions. Systematic reviews have demonstrated evidence for case management, comprehensive discharge planning, and respite care (Bauer, Fitzgerald, Haesler, & Manfrin, Reference Bauer, Fitzgerald, Haesler and Manfrin2009; Lopez-Hartmann, Wens, Verhoeven, & Remmen, Reference Lopez-Hartmann, Wens, Verhoeven and Remmen2012; Mason et al., Reference Mason, Weatherly, Spilsbury, Golder, Arksey, Adamson and Drummond2007; Yin, Zhou, & Bashford, Reference Yin, Zhou and Bashford2002; You, Dunt, Doyle, & Hsueh, Reference You, Dunt, Doyle and Hsueh2012). Randomized controlled trials provide evidence for in-home geriatric intervention programs, telephone support groups, health education programs, and adult daycare (Baumgarten, Lebel, Laprise, Leclerc, & Quinn, Reference Baumgarten, Lebel, Laprise, Leclerc and Quinn2002; Melis et al., Reference Melis, van Eijken, van Achterberg, Teerenstra, Vernooij-Dassen, van de Lisdonk and Rikkert2009; Smith & Toseland, Reference Smith and Toseland2006; Toseland, McCallion, Smith, & Banks, Reference Toseland, McCallion, Smith and Banks2004).

Meeting discussions identified many potential caregiving barriers. Since family members may not identify themselves as caregivers, requests for respite support or assistance that might alleviate stresses of caregiving can be delayed. This can leave caregivers consumed by caregiving tasks and with little time to manage their own needs. Family caregivers can feel isolated as their role and that of the person being cared for changes. Family dynamics and language barriers can complicate matters further, particularly when expectations related to care differ among family members. Family caregivers who do not reside in the same home or community can experience somewhat different challenges related to travel and receiving information second-hand. Privacy policies, accountability, and legalities related to sharing information within the health care system can be additional barriers.

Participants identified that the health care system tends to be complex, fragmented, constantly changing, and challenging to navigate. This can be a particular issue for persons with complex health needs who frequently interact with various components within the system. Duplication of resources, long wait times, poor communication, and use of technologies that lack integration can all impede the flow of information, cause redundancies, and delay access to services. Health care providers caring for individuals with complex needs are often under-resourced and ill-equipped to provide support to caregivers. This can leave the caregiver feeling unsupported, and needing to advocate, liaise with, and train health care providers in an attempt to fill system gaps. Economic issues due to care-related expenses or lost wages further add to the burden of caregiving. Earlier identifications of caregivers, education, and skills training of health care providers, and system changes aimed at providing appropriate evidence-informed caregiver supports could potentially address some of the gaps and barriers. These identified barriers are not necessarily unique to those caring for frail persons with complex health needs, but can be amplified by the complexity of the care needs of this population.

Participants also identified numerous facilitators. Although more resources are undoubtedly needed, caregivers have access to health care and community-based resources, and are supported through generally well-intended health care providers and agencies. There seems to be increasing awareness within society and government around the critical role that family caregivers play, and a growing awareness of the need to develop more formalized caregiver supports.