'Dementia is not the end of a life or a relationship'
How we can help the aging members of our family and community
PHOTOS | Community gathers to support those with dementia PITTSFIELD - If you have a loved one living with dementia, there is help available in Berkshire County. Just ask city resident Lynne Roberson and Susan Plummer. The two met in a local support group for caregivers for people with Alzheimer's or other forms of dementia. They know the struggle of watching a spouse lose precious memories or grow frustrated because they can no longer do everyday tasks, like go to the store by themselves or make a phone call. Roberson and Plummer attended a Thursday morning-long community conversation, "Dementia Friendly Berkshires," attended by more than 50 people at Berkshire Hills Country Club. After hearing health and human service providers, care workers and other caregivers identify adverse responses they've witnessed to the behaviors people with dementia - people being unnecessarily restrained, neglected or ridiculed - and then hearing fellow participants collectively support the need to address memory issues with compassion while acknowledging the diversity of dementia sufferers and their loved ones, the two women both got up to offer the group some words of encouragement. "For all that you do, you should pat yourselves on the back. I just wanted to say thank you very much for helping us," said Plummer. Roberson and her husband, David, and Plummer and her husband, Ed, have attended social programs together, like the Memories in the Making creative arts program of the Berkshire Alzheimer's Partnership. "Nowadays, we work hard to put so much joy into every day we have together to make it count," said Roberson of caring for her husband. "It brings so much comfort to us to have these programs," she said. While Thursday's community conversation provided people the opportunity to share and highlight what's available and working in the Berkshires, participants also raised the questions of how to let people know about existing resources, how to make people more comfortable interacting with people with dementia, and whether there are enough accessible resources to health care and social programs in the area to support families today and in the future. The Dementia Friendly Berkshires program, hosted by Elder Services of Berkshire County Inc. and the Berkshire Alzheimer's Partnership, was offered for free, subsidized by a state grant from the Executive Office of Elder Affairs designated specifically for community programs that address issues related to dementia. In Massachusetts, more than 120,000 are estimated to be living with dementia. One in 8 older adults in the commonwealth has Alzheimer's disease or a related dementia disorder that prevents them from remembering, thinking clearly and performing daily functions. Nearly 60 percent of these adults with dementia live in their own communities, and 1 in 7 lives alone. In Berkshire County, according to Medicare beneficiaries data collected by the Tufts Health Plan Foundation and Gerontology Institute of the University of Massachusetts at Boston, between 9 and 18 percent of a given municipality's population over age 65 has Alzheimer's disease or a related disorder. Census data also indicates that the Berkshires is the second most aged county in the commonwealth, meaning these issues are likely to become more prevalent as residents continue to grow older. Emily Kearns, co-coordinator at the Dementia Friendly Massachusetts Initiative, led the morning's workshop and conversation and said that some of the concerns brought up aren't unique to the county, such as the financial and social strain supporting a loved one with dementia or Alzheimer's can cause. What she said is unique about the Berkshires is the willingness to collaborate and expand upon existing programs and services. "There's a lot of important work that has to happen to change the perception of this disease," she said. "For example it's not something you can catch." "Dementia is not the end of a life or a relationship, but there are different ways with which people can work to understand it," said Elder Services of Berkshire County Executive Director John Lutz. Kearns led tables of participants through small group interviews and data recording through a process known as "appreciative inquiry" and then had them present the key themes that came up in their conversations, in terms of their desires for developing a Dementia Friendly Berkshires agenda. Listed among the top priorities for the county to address when it comes to dementia are: - Organizations partnering to bring services to those who need it. - Teaching awareness in schools, from elementary level to students studying in health and human services fields at the college level. - Creating and circulating a list of best practices. - Training employers and employees how to better work with and care for people with dementia. - Creating and facilitating more intergenerational experiences so that there's less fear and more knowledge about how to treat and include people with dementia in society. "We hear what is happening and we know people are out in the community trying to figure this out," said Lutz. "This is a first step in learning how in the community we can better meet those needs." Already, through additional state funding, Lutz said there are people trained to lead workshops in the community using virtual reality tools to simulate what it's like to have dementia and to become disoriented and unable to communicate effectively. Another program that's being developed is bringing a music program to elementary and middle schools, along with people with dementia to share music together. In various studies, music has been a successful tool in stimulating past memories in Alzheimer's patients and helping them retain memory. "The important thing we know," said Lutz, "is don't wait for a crisis to seek services and support. Be proactive." Caregivers Lynne Roberson and Susan Plummer agreed. "I want people to understand that it's still possible to have a life," said Roberson. "When we first knew there was a problem, a lot of people came up to me and said, 'Oh, I'm so sorry.' I don't look at it that way. This is what we have and we'll take it from there." "You have to take advantage of the support that's out there," said Plummer. "It's a good, safe place to begin."
TALK TO US
If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.