Alan Johnson of Wareham has devoted his entire career to helping those with dementia. Now, he also devotes his life to helping his mother with the disease, and he has a powerful message to share.
Alan began his social work over 30 years ago. He now is a Social Worker Director of Community & Family Outreach at Hope Dementia & Alzheimer's Services in Hyannis. About 8 years ago, his career transferred to his personal life when his mother was diagnosed. He is now the primary caregiver for her while continuing his life's work at Hope.
Dementia affects more families than one can imagine. Alan wants the community to know that they aren't alone in the struggle of caring for a loved one. Information, care planning and support are critical to a caregiver, and he'd like to share his story and offer ways to cope.
In Alan's own words...
Breaking our silence on dementia
Bringing awareness to difficult topics can often help people who are suffering find communities that can support them. This support can come when people need it most – often when they feel most alone. At Hope Dementia and Alzheimer’s Services, we strive to help families coping with these conditions connect with the people and communities that can comfort them and help them move forward.
Over 30 years ago, I started my career as a social worker focusing on the needs of dementia patients and their families. However, it wasn’t until eight years ago that dementia touched my life in a more personal way – my mom began to show signs. At first, I wanted to ignore the signs and excuse them as normal aging. Then, almost all at once, we both began to realize there might be more to it; something more than misplaced items or forgotten shopping lists. In 2014, she was diagnosed, and I was her primary caregiver.
Initially, I felt prepared; I had been caring for dementia patients and their loved ones for three decades. However, I quickly felt isolated – something that I have noticed and helped caregivers through in my long career.
This isolation that I felt, and that many caregivers feel, is often a result of how difficult it can be to discuss disease. But why? 50 million people have dementia worldwide, and 16.1 million Americans provide unpaid care for people living with the disease. This is a massive community of people – many of whom are struggling with it alone. That’s why it is so important to talk about dementia and its challenges, and to help families connect to others walking the same road.
I’ve benefitted greatly by leaning on a community through my professional work as Social Worker Director of Community & Family Outreach, and in caring for my mother. Having a space for families to talk more openly about dementia is a resource and a blessing that should be available to the millions of people facing the disease and caring for them.
Hope Dementia and Alzheimer’s Services is working hard to continue building this community, but we need help. Our support groups offer information, care planning and reassuring support like no other. We want the group’s availability to be widely known. No one can be a caregiver alone, especially with a disease that progresses over time. Strategies talked about in support groups explain how to handle the many signs, symptoms and behaviors of dementia – helping both the caregiver and the person with the disease. There are many stages of decline and having a support network to help caregivers cope through those stages is critical.
We hope that the support groups offered at Hope Dementia will encourage broader conversations about dementia and provide an example for finding common ground. We won’t let this disease break our families’ spirits, but rather we’ll come together to break the silence. It’s time to speak up to ensure that no one has to walk this path alone.