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CHARLESTON-- New findings from an Alzheimer's Association survey, released Friday in conjunction with the beginning of Alzheimer's & Brain Awareness Month, shows that while people overwhelmingly agree it often takes a village to provide care for someone living with Alzheimer's or another form of dementia (91 percent), far too many caregivers are doing it alone.
The survey found two out of three caregivers (64 percent) felt isolated or alone in their situation, and more than four in five caregivers (84 percent) would have liked more support with caregiving tasks, particularly from their family. The survey revealed the No. 1 reason people said they did not help with providing care for someone with Alzheimer's or another form of dementia was they felt as though another family member had already taken on the responsibility (74 percent), followed by their not living in the same area (62 percent).
"Alzheimer's disease is universally devastating, and the impact on families is dramatic," said Carolyn Canini, program director for the Alzheimer's Association West Virginia Chapter. "With close to 15 million Americans, including 107,000 West Virginians, providing unpaid care for someone with Alzheimer's or dementia, this survey shows that we must work to alleviate the weight on the shoulders of these individuals."
Findings from the survey show that in some families, Alzheimer's caregiving fosters strength and support, yet in other families, it tears relationships apart. Relationships between siblings were found to be the most strained, stemming from not having enough support in providing care (61 percent) as well as the overall burden of caregiving (53 percent). Among all caregivers who experienced strain in their relationships, many felt like their efforts were undervalued by their family (43 percent) or the person with the disease (41 percent).
Conversely, 35 percent of survey respondents said caregiving strengthened their relationships with other family members, with two out of three of these respondents reporting that they felt like the experience gave them a better perspective on life. Relationships between spouses/partners were strengthened the most from the experience, with 81 percent believing that "being emotionally there for each other" was a source of strength they drew upon for caregiving.
"As a caregiver, having the support of family and friends is so important," said JT Hunter, family services coordinator for the Alzheimer's Association. "Navigating the course of this disease is hard work, but with a team of supporters behind you, it is so much easier."
Resources for families
The Alzheimer's Association can help people learn how to navigate changes in their relationships with family members and friends. In addition to its 24/7 Helpline (800-272-3900), the Association offers various resources for families including:
• A new Alzheimer's Association infographic, offering specific tips to help families resolve conflicts and cope with Alzheimer's together.
• Guidance on financial and legal planning for Alzheimer's.
• Tips on long-distance caregiving and care coordination to help families better manage caregiver responsibilities.
• A video series, featuring insights from people living with the disease on how to navigate the personal and emotional challenges that accompany an Alzheimer's diagnosis.
• A community resource finder that helps families connect with local resources by simply entering their zip code.