Forecaster Forum: Mainers with dementia, and their caregivers, deserve better

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The Legislature’s Health and Human Services Committee recently voted down LD 1097, sponsored by Rep. Denise Harlow, D-Portland, which would have had the Department of Health and Human Services develop educational material to inform the public about dementia-related conditions.

These include recognizing signs of the disease; appropriate communication with those diagnosed; development of dementia-friendly public spaces, and resources within communities. This information would have been publicly available for state agencies, businesses, nonprofit and religious organizations throughout Maine. The decision to reject this bill is disheartening; tens of thousands of people and their caregivers are impacted by the disease in Maine.

I lost my mother to early-onset dementia. Prior to my mother’s diagnosis, I had no idea people in their 50s could have the disease. Due to my mother’s experience, I’m now aware people in their 30s, 40s and 50s can be diagnosed with dementia. Would you know the signs of a 30- or 50-year-old with dementia?

Like many others, my family thought my mother’s indiscretions were due to stress. After many tests, my mother was diagnosed with early-onset dementia at 55 years old; she died at age 60. Public awareness may have helped provide an earlier diagnosis and prevented heartache, worry and multiple (inappropriate) trips to the psychiatric ward.

During the five years of her rapid decline, dementia stole my mother’s ability to talk, read and write. What came out of her mouth were garbled and nonsensical words or noises. Although she wasn’t able to comprehend complexity, in moments of clarity, she understood the context of a situation and was able discern body language. Sadly, friends became distant, unable to cope with the significant changes in the woman they had known.

If friends and a few family members didn’t know how to behave or help, how might a stranger with no experience with dementia understand the limitations or even dangers for someone diagnosed with dementia? This was an issue my mother and I faced in public spaces. People were uncomfortable and didn’t understand how to communicate or be compassionate.

Dementia can be isolating, but I was determined to take my mother out of the house. But venues were limited due disorienting spaces. Her diminished balance and inability to communicate with others did not coincide with her youthful appearance. It was odd for people in public to see me holding her hand, opening the car door, tying her shoe, putting on her coat and zipping it up, ordering for her at restaurants, helping her sit, or even helping her eat.

I would often get strange looks of wonderment, accompanied by unease. In these moments I quietly let them know, setting them at ease by helping them understand. Yet, I was trying to enjoy precious time with my mother while also keeping her safe and secure. Educating people about dementia was not my priority, least of all in front of my mother as if she was not there.

Public spheres can be frustrating, overwhelming and frightening, so simple surroundings, clear communication and most of all kindness are key for those with dementia. Although most people who have dementia are with a caregiver on outings, there are still those who are undiagnosed or in the very early stages.

It is incredibly disappointing to see such an easy, low-cost, yet helpful and compassionate bill labeled as “ought not to pass.” LD 1097 would have helped inform those working with or serving some of our most vulnerable citizens and overburdened caregivers. With so many people at risk or currently affected by this disease, why not provide more public awareness?

This is my story, yet there are at least 67,000 caregivers in Maine who have likely struggled in public with their loved one, too. Please contact your local representative to reconsider this vote. It is a disease that impacts nearly all of us.

Sarah DeRosa of West Bath is obtaining a master’s degree in social work at the University of Maine.

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