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New Alzheimer’s Association survey shows impact of disease on families

 

Release from the Alzheimer’s Association:

CHARLESTON, W.Va. – New findings from an Alzheimer’s Association survey, released June 1 in conjunction with the beginning of Alzheimer’s & Brain Awareness Month, show 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 thousand 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. For these and other resources go to alz.org.

About the Alzheimer’s and Family Dynamics Survey

The Alzheimer’s Association commissioned a 15-minute online survey among a sample of n=1,502 U.S. adults ages 18 and older. Respondents were split into three groups including 250 currently giving care to someone with Alzheimer’s, 252 previously having given care to someone with Alzheimer’s and 1,000 having never given care. The margin of error for this sample is plus or minus 3.1 percent at the 95 percent confidence level. The survey was fielded between April 19 and April 25, 2017. For more information, please call the Alzheimer’s Association media line at 312-335-4078 or reach out via email at [email protected].

About Alzheimer’s & Brain Awareness Month

June is Alzheimer’s & Brain Awareness Month. The Alzheimer’s Association® encourages everyone to learn the facts about Alzheimer’s disease and its impact on individuals and families nationwide. Go to alz.org/abam to learn more. Families can share their stories about how Alzheimer’s has touched their lives using the hashtags #MyAlzStory and #ENDALZ.

About the Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit the Alzheimer’s Association at alz.org or call the 24/7 Helpline at 800-272-3900.

 

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