Results from this qualitative analyses of caregiver interviews and focus groups show that the relationship between caregiver quality of life and the care provided to older people with dementia is complex. Generally, caregivers of older people with dementia agree that the role offers both challenges and opportunities [5, 6, 13,14,15]. These are consistent with prior qualitative studies describing the ideal conditions for providing optimum care for older adults living with dementia, particularly in a community setting [7, 8, 11, 12]. To provide good quality of care, studies have shown that caregivers must pay attention to their loved one’s needs, devote adequate time and space for high quality care, and receive support to continue in their caregiving role [10, 11]. Also, it is important for caregivers to have access to formal support services and other resources that promote high quality of life . Importantly, such support can come from both paid (for example, primary care or respite care) and unpaid (for example, other relatives) sources [10,11,12].
Considering the enormous challenges involved in dementia caregiving, most caregivers report doing the best they can for their relatives living with dementia [4, 15, 17]. As results from the current study show, caregivers recognize that there are several factors beyond their control that could make it impossible for them to always meet their loved ones’ needs. Among the reasons offered by participants in this study are lack of support and resources, especially for caregivers who have to juggle multiple tasks as part of their role.
As the needs of older adults with dementia increases over time due to declining health, the caregiver is often called upon to perform even more duties, unless they are willing to transfer their loved one to a nursing home or other assisted living environments. However, many caregivers do not view institutionalization as a viable option for their loved ones due to the unfavorable outcomes that are often associated with this decision. For example, studies have shown that up to half of people with dementia in high income countries like the United States eventually reside in nursing homes or other assisted living facilities and more than two-thirds of care home residents have dementia . However, less than half of the older adults residing in these facilities report good quality of life . Other reasons why older adults and caregivers may be reluctant about nursing homes include media reports about nursing home abuse and costs . Therefore, many caregivers are reluctant or anxious about the prospect of moving their loved ones into these facilities due to low expectations about the care their loved ones would receive and the outcomes associated with that decision. For these reasons, caregivers may elect to keep their loved ones in the community instead. However, this decision may end up exacerbating the challenges reported by many caregivers.
In addition, findings from this study support the growing body of evidence regarding the importance of social support to caregiver and care recipient well-being [29,30,31]. For example, studies have shown that the caregiver’s ability to cope with the progressing needs of their loved one is dependent on several factors including the caregiver's gender, coping style, social network, and the caregiver’s level of intimacy with their loved one living with dementia . Indeed, availability and accessibility of support from other people, including surrogate caregivers or other paid sources of social support, may act as a buffer in mitigating the negative impact of caregiving on the caregiver’s wellbeing . Consequently, caregivers who report having access to social support report better quality of life and health outcomes compared to caregivers who do not [29,30,31]. Evidence from the current study supports the viewpoint that caregivers who have a more reliable support system are able to care for their loved ones better because the caregivers themselves are healthier. For these caregivers, feeling healthy and supported is critical to their ability to provide the best possible care for their loved ones living with dementia.
Further, findings from this study shed light on the personal needs of caregivers and why these needs should be taken into consideration when evaluating the care provided to older people living with dementia. Some researchers have referred to family caregivers as the real “victims” of dementia, whose needs are often overlooked in discussions about the impact of dementia . Indeed, some may view this characterization as being unrepresentative of all family caregiver experiences given many caregivers also report positive aspects of caregiving, including a sense of purpose and feelings of fulfillment knowing that one is caring for a loved one in their time of need [13,14,15]. However, the majority of caregivers’ experiences point to the fact that the energy devoted to caregiving affects the day-to-day lives and well-being of caregivers as they continue to make sacrifices to care for their loved ones even as the level of needs of both the caregivers and care recipient increase over time [3,4,5, 15, 17, 28]. The sacrifices made by caregivers may constitute progressive losses which impact the caregiver’s emotional, physical, mental, and spiritual health. Over time, the impact of caregiving on the caregiver’s health may be severe enough to render them unable to provide optimal care for their loved one.
Helping caregivers acquire coping skills that can help address their own progressing needs will be important for both the caregiver’s well-being and the care provided to older adults living with dementia. Several caregiver coping strategies have been identified in the literature along with validated instruments to assess their impact [33,34,35]. These coping strategies include: caregiver mastery, task management strategies, and problem-solving coping. For example, the Perceived Change Index has been used to assess whether a caregiver’s life situation has become worse or improved over the past month, while the Task Management Strategy Index evaluates the extent to which positive caregiving strategies were used to manage activities of daily living dependence and problem behaviors in care recipients [33,34,35]. These and other instruments provide the opportunity to evaluate the impact of any intervention designed to help caregivers manage the caregiving role.
Overall, the caregivers interviewed in this study express the desire to provide the best possible care to their loved ones living with dementia. They also recognize the importance of maintaining a healthy and balanced quality-of-life, particularly as their loved ones’ condition deteriorates over time. Since caregivers’ needs tend to increase as their loved ones’ condition worsens, efforts must be made to support caregivers in meeting these needs. Caregivers who describe having good support systems seem to be better at coping with the disease progression compared to caregivers with limited support. Social support was identified as an important buffer for caregivers since it provides the opportunity to share some of the burden associated with caregiving. Also, social support contributes to favorable health outcomes for the caregiver including better sleep quality, lower rates of depression, lower burden, and better psychological outcomes [36,37,38]. As the findings from this study show, these factors improve the caregiver’s own quality of life and can contribute to better care for older people living with dementia.
While this current study was conducted prior to start of the COVID-19 pandemic, it is important to note that restrictions put in place to limit the spread of the virus are exacerbating the challenges faced by caregivers to meet their loved ones’ needs and to keep them safe. Due to social isolation, limitations in the availability of in-home health services, respite care, and other types of informal support, many caregivers are at risk for greater emotional and physical stress [39, 40]. For those caregivers whose loved one may require residential long term support services, this option may not be viable due to increased infection and mortality rates of COVID-19 in these settings  and limited access to visitors . Now more than ever, caregivers need psychological and physical support from providers, family, and friends to help preserve their health and wellbeing [39, 43].
Strengths and Limitations
This study has some limitations. For example, a more diverse sample may yield slightly different themes. For example, studies have shown that family caregivers who are members of a racial or ethnic minority group may face unique challenges when caring for their loved ones [44,45,46]. Therefore, the lack of racial or ethnic diversity among the study participants could be considered a limitation.
While future studies are needed to further explore the relationship between caregiver QoL and care provided with a greater focus on racial/ethnic identity, type of dementia, and socioeconomic status, the use of both focus group and one-on-one interviews for data collection is an important strength of this study. Also, strategies such as memo keeping, audit trail, and investigator triangulation were used to enhance reliability, validity, and generalizability of the study findings [25,26,27].
Further, recruitment of participants from two geographic locations is another strength. In addition, interviews and focus groups were conducted in-person, allowing the researchers to observe participants’ body language, facial expression, non-verbal cues, and other relevant reaction.