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Legislative Viewpoint

Senator Adam HindsSenator Adam G. Hinds

Community supports benefit dementia patients and family caregivers

When I was in elementary school, my grandmother, whom I affectionately called Nina, moved from California to Shelburne Falls to be near our family. After school I’d walk to Nina’s apartment at Highland Village, where the two of us would watch a soap opera or golf tournament on her TV until my mom or dad would pick me up.

When I entered high school, we all noticed Nina’s short-term memory slipping. As time went on, it was not uncommon to come home to dozens of answering machine messages, all from my grandmother, all saying essentially the same thing. My mother provided the bulk of care for Nina at Highland Village, visiting whenever she could, and later at a nursing home in Shelburne.

I learned then how difficult it is to watch a family member’s personality slip away, and I’ve seen the strain a person’s dementia can put on a family.

This past fall in Pittsfield, I was invited to visit a family member support group and heard how the disease can overwhelm patients and their families. I listened to stories of physical, emotional, and economic impact that the disease can cause family caregivers. I also saw the comfort and emotional stability such groups can provide.

Nearly fourteen percent of older adults in the Commonwealth have Alzheimer’s or a related dementia. In rural Massachusetts the challenges for those with dementia and their caregivers increase, due to lack of access to medical care, support networks, broadband Internet and transportation options.

Fortunately, our region is responding. A group called Age Friendly Berkshires is working to make the County more responsive to the needs of its aging population, including those with dementia. In March, I hosted a briefing for legislators and staff at the State House with the Mass. Healthy Aging Collaborative, AARP Massachusetts and the Executive Office of Elder Affairs where Age Friendly Berkshires was invited to share their experiences. More recently, a group of hilltowns in my district—Chesterfield, Cummington, Goshen, Plainfield, Westhampton, Williamsburg and Worthington—received the Age Friendly designation from AARP and the World Health Organization. The designation comes with a commitment by the towns to improve conditions for elders. With a grant from the Executive Office of Elder Affairs, these seven communities are working to make it easier for elderly residents to age in place while reducing isolation and loneliness.

Molly Chambers, a social worker, has been doing her part to assist family caregivers for those with dementia for more than twenty years through the support group she’s run at LifePath in Greenfield. Over the years the group has supported husbands, wives, and adult children from near and far as they help each other through tough stretches and grow as close as family. LifePath offers many other supports for people with dementia in addition to the group.

“I’ve seen the strain a person’s dementia can put on a family.”

Caregiving can wear a caregiver out, sometimes to the point of illness. Imagine, Ms. Chambers says, waking four times every night to soothe an agitated or disoriented partner. Ms. Chambers believes—and I agree—that we can do better by making it easier for family members to get breaks by providing more affordable respite care. In other cases, what’s needed, she says, are grants to support home renovations or adaptations, like ramps and safe showers, which can allow those with dementia to stay in their homes longer.

Five years ago the Pittsfield agency Home Instead Senior Care began its support group for family members of those with Alzheimer’s or another form of dementia, and more recently the agency started a group for those with dementia. During my visit with the support group for caregivers, facilitated by Bobbie Orsi, Director of Community Relations at the agency and also one of the founders of Age Friendly Berkshires, I saw firsthand how the support group served to validate and normalize what caregivers and their family members were going through.

Ms. Orsi, a nurse, had to navigate these struggles herself when her husband John, an electrician, was first tested for cognitive issues in 2007 and had them confirmed in 2011. She cared for him as Alzheimer’s made him increasingly agitated and sometimes aggressive. Ms. Orsi had help from a number of caregivers from her agency, including one who accompanied John on volunteer shifts at the South Congregational Church food pantry. Another caregiver helped John do projects in their yard and accompanied him fishing at the Orsi’s home on Goodrich Pond. Dementia, Ms. Orsi noted, doesn’t take away our need to keep up our interests and the roles we serve in the community.

Removing a loved one from the home for care and safety is among the most difficult decisions a family member can face. After much family discussion, Ms. Orsi had to make that decision in late 2017. John lived out his life in a number of healthcare facilities until he died in November 2018 at age 73.

What motivates Ms. Orsi today is facilitating the support group for family caregivers. Her aim is to listen to what family members are experiencing and help them to better understand and determine what they need. The work Ms. Orsi does is essential, but there is more we can do for those with Alzheimer’s and other types of dementia.

These steps and others will require community support and political will, but they should allow those with dementia—and their family members—to live better lives.

State Senator Adam G. Hinds (D-Pittsfield) represents the 52 western Massachusetts communities of the Berkshire, Hampshire, Franklin & Hampden District. He serves as the Senate chair of the Joint Committee on Revenue. This is his second term in the Massachusetts Senate.