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Survey reveals impact of Alzheimer's on families

Times West Virginian - 6/13/2017

June 13--FAIRMONT -- Alzheimer's not only has an effect on the individual who has it, but it also impacts that person's family. A new Alzheimer's Association survey reveals a dramatic impact of the disease on families.

According to the survey, 91 percent of people overwhelmingly agree it often takes a village to provide care for someone living with Alzheimer's or another form of dementia.

Carolyn Canini, program director of the West Virginia chapter of the Alzheimer's Association, said the disease is affecting people worldwide.

She said, "Having this disease affects people not only in their memory but in their thinking and in what they are able to do to care for themselves at some stages of the disease."

In West Virginia alone, more than 37,000 people over the age 65 are affected with Alzheimer's disease, Canini said.

"We know that because it takes more than one person to provide care for each person with Alzheimer's disease. There are over 100,000 caregivers just in West Virginia that are supporting people that have Alzheimer's disease," she said.

Canini added that a lot of people that they come in contact with are those caregivers and family members who are reaching out to the association for help, support and resources because of the toll the disease takes on the whole family.

The survey found two out of three caregivers felt isolated or alone in their situation, and more than four in five caregivers would have liked more support with caregiving tasks, particularly from their families. Also, according to the survey, 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).

"As a caregiver, having the support of family and friends is so important," said JT Hunter, family services coordinator for the Alzheimer's Association, in a press release. "Navigating the course of this disease is hard work, but with a team of supporters behind you, it is so much easier."

The biggest tool that the association offers is the free 24/7 helpline, 800-272-3900, for individuals who have memory loss symptoms, their caregivers or the professionals that serve them.

Canini said individuals are able to talk to a real person who can help answer their questions. The helpline can assist with knowing what to ask doctors about the disease, help connect them with other services in their communities and provide a listening ear.

In addition to the helpline, the association also provides support groups with peers, education opportunities available in person and online, guidance on financial and legal planning for Alzheimer's, 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, and 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.

Canini also offered several tips for how families can face the disease together.

"One of the first tips that I would share with families is to reach out and get connected with support, because we know that the journey that they are on in caring for someone with the disease, they can't do it alone," she said. "It often takes a village to care for someone with Alzheimer's disease.

"Contact the helpline, see what is available in (your) community, see if there is a support group, get connected with education ... so that they can have an outlet and have someone to just give them support and resources."

Encourage family members and caregivers to recognize that "a person who had dementia is still there, and their dignity and who they are as a person. Although this disease may change some things for that person, they are still there," Canini said. "It is part of our roll as family members and caregivers to help preserve that person's sense of dignity and their involvement in their decision making."

Canini also said, "Arming themselves with eduction is always a wise step."

Email Kelsie LeRose at klerose@timeswv.com.

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