Communication and collection of information from stakeholders
We met with 15 community agencies in meetings ranging from 1 to 3 h to describe the goals of the Caring for the Caregiver program, to document services delivered by these community agencies, and to support potential future collaborations. There was a consensus across community agencies that there are important gaps in the provision and coordination of services and that there is an essential role for the Caring for the Caregiver program in practice, education, and research. Some examples include the need for an up-to-date registry of support services for family caregivers, need for a systematic approach to care for those with dementia and their families at the time of diagnosis, respite services, and the need for more community-based education about caregiving for families.
We also recruited 13 family caregivers, identified from a dementia clinic, to complete a 30-min survey by telephone. Caregivers represented the disease trajectory with those in the very early phase of caregiving to those who had been providing care for up to 10 years as well as two former caregivers who had cared for their dying spouses. The sample consisted of both spouses and adult children caring for relatives with dementia, was 67% female and 40% Hispanic. To increase the diversity of our sample, we also held a focus group with 15 caregivers living in an outlying rural community to identify their needs for support. This group was 90% Hispanic, 80% female, with similar diversity to above in kin relationship to their family member with dementia. Consistently caregivers described the challenges for their families resulting from providing care to a loved one with dementia. Caregiver’s needs included the difficulty of getting a diagnosis and knowing what to do at that time in regards to medical and legal power of attorney. The diagnosis phase was particularly challenging for caregivers from the rural setting who have less access to healthcare facilities and medical specialists. Caregivers also described their desire to meet with and learn from other caregivers in similar situations and the importance of peer support. As stated by one caregiver, “I don’t need to go into a lengthy explanation when I am speaking to another caregiver…she knows and understands what I am going through without me needing to say very much at all.” Finally, caregivers reported difficulty finding and applying for resources and assessing the quality of the care, suggesting the need for a “one-stop shopping” model. At the same time, caregivers want healthcare professionals to recognize their expertise in caring for their family members. Caregivers attending local support groups shared concerns with our team that were similar to the findings outlined above.
Collaboration where stakeholders are partners
There were 53 participants who attended the community-academic forum. The distribution of participants at the forum was as follows: 28% members from community agencies, 25% family caregivers, 8% healthcare professionals, 22% from the university, and all members of the Caring for the Caregiver team (17%).
Participants listed a number of assets within the San Antonio community for family caregiving (see Appendix 1). In response to question 2 which explored the needs of family caregivers and how they can be better supported by building on the existing strengths, the following themes were identified: i) making the invisible visible; ii) you don’t know what you don’t know; iii) learning too late; and iv) anticipating and preparing for the future.
Making the invisible visible
Participants discussed the need for increased awareness of the role of family caregivers. One of the difficulties is that caregivers themselves do not routinely self-identify with this role, but rather perceive their caregiving activities as part of their normal role as spouses or children and therefore become invisible to the community as a family caregiver. Participants from community agencies stated that without awareness of family caregivers, they are not able to provide them with needed services. As stated by a community partner, “One of the things that we’ve recognized is that many caregivers don’t recognize themselves as caregivers. So education, I think, is extremely important to get the word out.” Furthermore, caregiving is not part of our traditional social conversation so caregivers do not typically discuss their needs for services or support. This phenomenon may in part be related to the stigma that continues to be associated with dementia but, nonetheless, it contributes to the difficulty caregivers experience in navigating and accessing available resources and support when needed. As one caregiver stated at the forum, “You go into this and you’re like help! And I don’t know where – you feel alone. You don’t know what is out there, and then once you’re through it… people don’t talk about it. It shocked us how many friends we had that suddenly “Oh yeah, we did that with our mom.” Well why didn’t we know that?”
You don’t know what you don’t know
Caregivers consistently described being provided with limited information and not knowing how or where to ask for help, “you may not be at a place where you know even where to go to for help, and where to start”. Community agencies described the challenges of identifying and engaging caregivers to make them aware of services as families may not be provided, at the time of diagnosis, with information about relevant community agencies such as the Alzheimer’s Association. Healthcare professionals described not knowing the resources available in the community which subsequently limited timely and appropriate referrals for caregivers. As one community agency member stated, “And I think sometimes, they don't know what they don’t know.” Family caregivers described diagnosis as a particularly difficult time, being in shock, and not knowing how to proceed. “He was diagnosed…. We were not really told anything. He had a memory problem. And you’re just kind of thrown out there. “Now, go figure it out.”” Consistent across the groups was the importance of the time of diagnosis, the limited resources that are focused on supporting families during the diagnostic phase, but also the importance of connecting with caregivers at this time.
Learning too late
A lack of information, as highlighted by the theme above, was related to the perceived timeliness of information. Consistently it was stated that information seems to come “at random”. There is not a systematic way that information about resources and support is delivered. Caregivers describe learning too late of available support and services that would have changed their earlier decisions and potentially their caregiving situation. As one caregiver stated, “my thought is that if somebody would have talked to me earlier.” A provider who also was a family caregiver stated, “I never appreciated how hard it was for families to find good quality home health care in this community until I had to do it myself. And I thought I knew how to do it and it was a nightmare.” Participants discussed that one of the challenges of timely access to resources and support was that information is found in multiple different places and ways rather than through a streamlined system which would help to ensure that people receive timely information and support through-out the different phases of the disease and their caregiving trajectory. Participants emphasized the importance of better dissemination of the information about resources. As one community member stated, “there are some resources out there, again, but without marketing them, people don’t know where to start… they’re so stressed that they’re just searching for anything that’s going to help save them from sinking…”.
Anticipating and preparing for the future
Caregivers discussed not knowing that Alzheimer’s disease is a chronic, progressive illness, a common misperception among not only caregivers, but also the community at large. Caregivers described how they were unaware early on that Alzheimer’s disease is a terminal illness which limited their ability to plan and access resources to support them and their loved one through advanced stages of dementia. A participant from the community stated, “this is another area that needs to be dealt with as well, helping the public to understand that sometimes or in all cases, there won’t be improvement.” One caregiver stated, “We were never told this was a terminal illness – we were not prepared to deal with the situation as it progressed.” Another caregiver described finally getting hospice care the last 3 days of her husband’s life, “I didn’t get hospice in early enough – didn’t know to look at this – it was a god-send when it happened.” Healthcare professionals discussed the need for palliative care and earlier information about future care to help patients plan and also to support family caregivers. This includes advance care planning and advanced dementia-specific care.