Column: Breaking the silence for dementia caregivers

I won’t bore you with statistics about dementia unless I can make them meaningful to you, which I believe I can. A frame of reference should help. The percentage of Americans with dementia is about one-quarter the number of Americans struggling with substance abuse, which is considered an epidemic. The number of people falling into the dementia spectrum will grow rapidly due to the changing demographics of the U.S. population. Today, about 8 percent -- or 5 million -- of the nation’s 65 million seniors, have dementia, according to the Centers for Disease Control and Prevention. What does this mean for North Shore communities? According to the U.S. Census bureau, the 34 communities of Essex County have a senior population of 130,000. As many as 10,000 individuals have dementia. Ironically, it is the caretakers who are the most impacted by dementia. Dementia has a ripple effect, extending to families and loved ones whose lives are significantly altered by the demands of caregiving.

The challenge of dementia is long term. Losing a loved one who is slowly slipping away over several years is heartbreaking. Heaped upon that heartbreak is the growing exhaustion of the caretaking experience of caregivers. This often contributes to the caregiver’s own mental and physical decline.

Why the silence?

Maturity and experience associated with living a long life are often unappreciated in a culture that is seemingly obsessed with youth. In our society, youthfulness carries a value disproportionate to its actual contribution. Conversely, the maturity of those in the latter stages of adulthood is often devalued due to negative reviews on aging. Ageism, like sexism and racism, can be subtle. Those who are older are acutely aware of ageism and develop strategies to minimize its impact on their lives. One strategy is to hide any behaviors automatically associated with aging. Forgetting something is common to all of us, no matter what our age, but an older person who forgets something may deal with greater scrutiny regarding their cognitive functioning both from themselves and others. This makes it more difficult for those who are older to talk about dementia, which initially manifests itself in forgetfulness. Since under the best of circumstances, aging is seen as a negative, it is not surprising that silence surrounds an affliction as challenging as dementia that is associated with aging.

Most people, as they age, lead vibrant, energetic and productive lives and most are self-sufficient in dealing with the physical and mental challenges associated with aging, including the inevitable barbs and witticisms about “old people.” Having a sense of humor about aging is not only healthy -- it is essential. After all, human foibles are too numerous to count. Youthful indiscretions are very funny (substance abuse, not funny). Forgetfulness is funny and is part of the human experience and is common to all, no matter what their age.

If we are not presently impacted by dementia in our family, we likely will be soon enough. Those afflicted with dementia need substantial help, and that need for help creates considerable and constant stress on caregivers. Caregivers, you are not alone. It is time for all of us to talk about dementia and to take it out of society’s shadows for the sake of the caregivers.

So what can you do about dementia and the caregiver process?

Caregivers and family members can learn how to better communicate with their loved ones by first understanding that most individuals experiencing dementia can communicate about life experience at some level. They may not remember what happened five minutes ago but they can talk about past life experiences. Engage them. Let them tell their stories, and most importantly, enjoy the life experiences that they share. The councils on aging that run your community senior centers are increasingly involved in support services for the caregivers. Support services include outreach programs and “memory cafes” designed to bring those with dementia and their caregivers out of isolation. Memory cafes are free social events. For an online directory, go to www.jfcsboston.org. There are more than 14 cafe events every month in Essex County. Caregivers can contact Patrick.maher@middletonma.gov for information on caregiver support services.

Don’t hesitate to get help to assist you in your caregiving activities. Many services are available for personal care assistance, companionship, nursing assistance and household assistance. We are fortunate to live in a state with progressive social supports at every level. State and federal programs are managed by the councils on aging (each city and town has one) and by regional “Aging Services Access Points.” In the North Shore area, the senior population can contact any of these agencies for information on senior services.

An invitation to caregivers

A limited survey on dementia is underway in our North Shore area to help us advance knowledge on helping caregivers. Participation is welcome and easy. For information about the study, please contact me at Patrick.maher@middletonma.gov or by phone at 978-777-4067. This is an opportunity to help yourself and others.

Patrick Maher is case manager for the Middleton Council on Aging.

 

 

Recommended for you