"When people say that, it feels like you're getting stabbed," said Lynch, who expects her condition will lead to Alzheimer's disease. "It highlights cognitive loss, and it's totally demoralizing."
Lynch and others will share their stories of living with dementia during a public forum on Wednesday, March 28, sponsored by the City of Palo Alto, Avenidas, Age-Friendly Silicon Valley and the Alzheimer's Association to explore how Palo Alto can become a "dementia-friendly city" that is inclusive and supportive of people living with dementia.
Palo Alto is among a growing number of communities around the world that have begun to look at how government, businesses and residents can work together to provide better resources — like training for first responders, community support networks and policies that better aid employees who are also caregivers — for the expanding population of aging adults who are being diagnosed with dementia.
In Santa Clara County, more than 31,000 residents currently have Alzheimer's disease or other forms of dementia, and that number is projected to increase to 56,000 by 2030, said Jessica Rothhaar, policy and advocacy manager for the Alzheimer's Association of Northern California and Northern Nevada.
Rothhaar said most people with dementia can remain active in the community and, with appropriate support, will have a better quality of life at lower costs than if they are isolated or institutionalized.
By changing the way people think, act and talk about dementia, Rothhaar said she believes the community can play a key role in helping those afflicted with memory loss remain independent and socially engaged.
"Dementia is something we usually don't talk about, and people avoid someone who has it," said Palo Alto Mayor Liz Kniss, who will speak at the event. Kniss, who helped care for a relative with Alzheimer's living in her home, said the isolation that comes along with the disease can be unnerving.
"I'd certainly be happy if people began to look at somebody with dementia as a person who can use their help, support and especially their understanding," she said. "I'd like people to become aware of it, not fear it and be aware of it among your group of friends because maybe you can help."
Families usually have a hard time acknowledging a dementia diagnosis to friends and relatives, said Paula Wolfson, a social worker at the nonprofit Avenidas senior services agency who for many years has operated support groups for caregivers. They feel stigmatized for being in a "sad, depressing and shameful situation, especially if the person with dementia was well-known and very accomplished in research, academia or Silicon Valley tech," she said.
A typical dynamic is that the caregiver family does not wish to be a burden to their neighbors and the neighbors are reluctant to ask questions or ask if they can help for fear of seeming intrusive, Wolfson said.
"There needs to be a way that everyone has 'permission' to reach out to the other," she added.
Lynch said she initially felt devastated by her diagnosis.
"I was literally in hysterics, and I didn't know what to do," she said.
Eventually she found help, including a weekly support group, through the Alzheimer's Association.
"Having this disease is a journey that can be scary, sad and lonely, but for many of us, there's still a lot left," she said. "I sing in four choirs; I tutor an English learner. I'm great in the present tense, but I often forget things I've said or done. That's hard. It's embarrassing and it takes awhile to adjust to the losses."
Lynch remains in her longtime book group despite having lost her ability to read books. She urges neighbors to include people in social engagement activities even if they can't fully participate any more.
Her advice to people wishing to support friends or neighbors with dementia: "Stay in the present tense because that's where they operate. Help them contribute and stay active in the community, maybe by taking them to church, concerts, art shows, parks or garden tours. Your friendship and acceptance and support is the greatest gift you can give."
Menlo Park resident Karen Berman, who has cared for her husband since 2009, identifies her main problems as "social isolation and lack of emotional and practical support."
She has hired caregivers to stay with her husband a few hours a day so she can get out for activities of her own, including a caregiver support group and long walks with her dog.
The support group "has just been essential for my mental health," she said. And during the dog walks, "It means a lot to me when somebody smiles at me. I'm kind of isolated and lonely, and it's really nice that people speak or say hello or smile."
Berman, who moved to Menlo Park four years ago after 25 years in Los Angeles, said she would welcome closer relationships with neighbors.
"My husband really can't be left alone, and a lot of times I have to cut short what I'm doing to rush home before my help leaves," she said. "It would really be nice to know my neighbors well enough to call and say, 'Could you stay with him until I get there,' a little exchange for things like that."
Practical things people can do that can help, Wolfson said, are assisting with transportation for things like groceries or medical appointments; making friendly visits with pets or children; being on the lookout in case the person with dementia wanders off; inviting the caregiver for a coffee breaks and including people with dementia in social gatherings.
As part of its broader push for an "age-friendly Silicon Valley," Santa Clara County last year joined Dementia Friends, a global movement begun by the Alzheimer's Society in the United Kingdom to change the way people think about dementia.
Diana Miller, the county's senior agenda project manager, said a 2016 survey that the county conducted found that few people have a clue about where to find resources for someone with dementia.
"When we asked people where they would go ... it was almost like a blank," Miller said. "Either people don't think about it, or they're not talking about it."
IF YOU'RE GOING
"Making Palo Alto a Dementia-friendly Community" will be held at Mitchell Park Community Center, 3700 Middlefield Road, Palo Alto, from 7 to 9 p.m. Admission is free, but space is limited and an RSVP is required. RSVP to Mary Suarez at email@example.com or 408-372-9901, or go to tinyurl.com/advocacyPA2018.
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