On the occasion of World Alzheimer's Day on September 21, 2023, Senior Home Plus conducted a survey of family caregivers who are also employed to better understand the challenges they face and how they manage to balance their professional lives with their caregiving roles. Based on the responses and testimonies of 244 Alzheimer's caregivers who participated in a questionnaire, this analysis reveals that despite a busy schedule and the dual role they assume, most respondents manage to maintain a certain balance. This survey also highlights the lack of knowledge among those surveyed regarding existing support systems to assist them in their caregiving role.
Among the surveyed panel, 73% of Alzheimer's caregivers are in a couple relationship. It is mainly women who take on the role of caregiver (77.9%). The family relationship between the caregiver and the person receiving care seems to play a significant role in the provision of care. It is observed that in the majority of cases, it is parents who receive assistance from their children (72.4%), while spouses come in second (16%), and step-parents in third place (4.8%). The majority of respondents are employed, while 9% of them have temporarily ceased their professional activity (career change, unemployment, sick leave, etc.).
Among the active respondents, 73% report working full-time. Therefore, many of them have to juggle between their professional responsibilities and their caregiving role, which can be a delicate situation that can impact both their career and their quality of life as caregivers.
The survey highlights the need for respondents to be flexible in order to coordinate their professional and caregiving lives. In fact, 74% of those surveyed find themselves "often" or "sometimes" having to shorten their workdays or even take time off to care for their loved one with Alzheimer's. At their workplace, respondents often keep their situation discreet, and many hesitate to discuss their difficulties in public. According to various testimonies, the burden on Alzheimer's caregivers can sometimes be a taboo subject: "My employer was not informed," or "Regarding my private life, no one knows," or "I avoid talking about it." However, in light of the results of this survey, it appears that once informed, colleagues and employers seem to be understanding and show compassion and empathy toward the dual responsibility shouldered by caregivers. However, while the majority of respondents (67%) report feeling understood by their colleagues, nearly a third of them do not share this sentiment and instead assert that they face indifference or even incomprehension from their professional environment regarding their role as caregivers for their loved ones with Alzheimer's.
Even though balancing a professional career and a caregiving role can be challenging, most respondents are not willing to give up their professional activities. The majority of them (51.3%) see their professional sphere as a way to decompress, gain perspective, and maintain social connections to avoid being completely consumed by the distress of their loved one and the role they play alongside them. 19.3% of respondents have stated their commitment to their professional career and are not willing to give it up to fully dedicate themselves to their caregiving role. Despite a very busy schedule, 57% of those surveyed manage to reconcile their professional lives with their caregiving role. On the contrary, 43% of them claim they have had to neglect their professional activities to assist their loved one with Alzheimer's. Through their testimonies, the latter group has shared the challenges they face in fully engaging in their jobs while also fulfilling their caregiving responsibilities.
While 92% of respondents dedicate several hours per week (45%) or even several hours per day (47%) to the care of their sick parent, 97% of them provide care voluntarily. Therefore, despite the time they invest in their caregiving role, active respondents do not receive compensation as caregivers. As the disease progresses, the caregiver's duty becomes more complex and intense. Caregivers provide versatile assistance and can intervene with their loved one on various levels. Many of them take on the role of home aides or caregivers, while others coordinate the intervention of these professionals to support their loved ones in essential daily tasks such as household chores, meal preparation, assistance with getting up and going to bed, personal care, as well as administrative tasks and accompanying their loved ones to medical appointments. However, many caregivers do not limit themselves to performing these "technical" tasks. The psychological aspect seems to constitute a significant part of the caregiver's role. The testimonies collected reveal the attachment and dedication that caregivers demonstrate daily and demonstrate their desire to improve and alleviate the difficult daily lives of the individuals they care for.
While the caregivers surveyed demonstrate remarkable dedication to supporting their loved ones with Alzheimer's, they occasionally seek the assistance of a third party to fulfill this delicate mission. In fact, when asked, "Have you ever sought assistance to relieve you in your role as a family caregiver?" 62% of respondents answered affirmatively. This assistance is provided by a family member (parents, siblings, spouse, friends) in 42% of cases. However, more than half of the respondents (55%) rely on a home care service to handle the time-consuming and labor-intensive daily tasks such as cleaning, personal care, or meal delivery.
The role of a caregiver can be extremely taxing, both physically and psychologically. When the need for rest becomes imperative or in cases of prolonged absence, nearly half of the respondents turn to temporary placement in specialized facilities.
However, 45% of them assert that they have never opted for this alternative. Finally, when the disease reaches an advanced stage, and despite the numerous efforts made by the caregiver, it becomes impossible to continue care at home, permanent placement in an Alzheimer's care facility becomes necessary.
Respondents who have played the caregiver role for a longer or shorter period still feel a sense of responsibility toward their loved ones, even after they have been placed in a care facility.
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