In the United States, dementia affects an estimated 5.8 million Americans, and this number is expected to rise to nearly 14 million by 2050 (Alzheimers Dement 2020;16:391–460). Most of these future 14 million Americans will receive care from a family member. As practitioners in post-acute and long-term care, we are already aware of the devastating impact of Alzheimer’s disease on caregivers and their emotional, physical, psychological, and financial difficulties. Family caregivers may be responsible for total dementia care support, which limits their social activities, increases their social isolation, decreases their leisure activities, and adds to family distress (Am Fam Physician 2000;62:2613–2622). Caregivers’ physical and mental/emotional health are neglected as well in making the needs of their family member a priority (Int Psychogeriatr 2014;26:725–747).
Because the onset of dementia is usually subtle, a family member often assumes the role of caregiving on a gradual basis, sometimes without recognizing the process is occurring. This has been called the “unexpected career of caregiver,” a complex, stressful role the caregiver must balance with other demands such as jobs and child-rearing, not to mention daily activities such as shopping and visiting with friends (Inquiry 2018;55:46958017751507).
To learn more about the importance of ADS for caregivers, our undergraduate nursing student–faculty collaborative research team completed focus groups with family caregivers who used ADS. We hoped to learn more deeply about the impact of using this type of respite care. Some of the questions we asked included “Tell us about your experience of caring for your loved one” and “How has the adult day center affected your role as a caregiver?”
Four themes emerged from the participants: common emotional responses, a sense of caregiver social isolation, the overwhelming impact on daily life, and benefits of ADS. The caregivers described a variety of emotions, including feelings of grief, guilt, denial, regret, and despair. They talked about how caring for their family member with dementia had changed their daily lives and that they’d had to disengage from their lives and social connections to provide care to the family member. The participants also repeatedly mentioned the benefits of ADS.
They were grateful for the security and peace of mind provided by ADS, and they felt it promoted their resilience and ability to maintain some normal functioning. One participant stated, “I was able to get out and at least run, go to the YMCA ... That’s where I was able to relieve my stress. Because as you know, there’s a lot of stress.” Even though family caregivers knew they had to cut back on the things they loved to do, such as hobbies and meeting friends away from home, ADS provided a glimmer of normalcy for those hours when the caregiver could get away to recharge and reduce the challenges associated with caregiving. “Because you have to have time on your own because, otherwise, you’re 24/7.”
Using ADS not only allowed caregivers time to perform daily activities such as working, shopping, and exercising, but also provided a safe environment for the family member with dementia: “[ADS is] a godsend, because that’s a break for me. I try to work during those hours.” Knowing their loved one was safe was particularly important: “It gives you peace of mind. I mean, there’s a lot to be said for the peace of mind of who they’re with and they are safe.” One caregiver participant summed up everyone’s thoughts: “And [ADS is] the best thing I ever did ... It saved me.”
The challenges and struggles of dementia caregiving are present on a daily basis. ADS helps family caregivers maintain a normal life by allowing them to continue basic activities, commitments, and family life. Respite services such as ADS provide caregivers with opportunities to care for themselves, which is essential for their “career as a caregiver.” Knowing how ADS supports resilience in caregivers, the PALTC community must include education about these community-based respite services and anticipate the problems caregivers may face when trying to find and use safe ADS.
Respite services are limited in some communities. Health care providers need to gather information about resources in their immediate community and anticipate the future care needs of their patients, such as after discharge from a post-acute stay or before caregivers must make the difficult decision to use residential LTC for their loved ones. For instance, what resources are available in the area? Who can assist the caregiver with decision-making about using ADS? And what financial resources are available for those who would like to use an ADS but do not have the financial means to do so?
Health care providers need to have open conversations about how the caregiver is coping and focus on supporting resiliency. Knowing what types of stress people are experiencing can help practitioners in PALTC know when to suggest using ADS and other community resources to support the unexpected caregiving journey.
Dr. Kessler teaches courses at Valparaiso University in both the undergraduate and graduate programs in nursing. She received the 2017 Valparaiso University Award for Excellence in Research and Creative Work. Her research interests include cognitive appraisal and quality of life for the elderly leading to her being awarded the Kreft Endowed Chair for the Advancement of Nursing Science.
Dr. Rayman joined the faculty of Valparaiso University in 2011 and teaches in both the undergraduate and graduate programs. She has 34 years of clinical expertise as a nurse and a family caregiver.