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Palo Alto looks to become a 'dementia-friendly city'

Push to create better support services gains momentum

Ginger Camp sits at a sunny table as she works on a coloring project during an art-making activity at the Avenidas Rose Kleiner Center in Mountain View on Feb. 28, 2018. Photo by Veronica Weber.

After living with a diagnosis of "mild cognitive impairment" for the past three years, Kitty Lynch has a few things she'd like people to know.

The 70-year-old cringes when her friends say "Don't you remember?" or "I already told you that."

"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."

Contributing Writer Chris Kenrick can be emailed at ckenrick@paweekly.com.

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 msuarez@alz.org or 408-372-9901, or go to tinyurl.com/advocacyPA2018.

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Comments

10 people like this
Posted by dos quads
a resident of Santa Rita (Los Altos)
on Mar 2, 2018 at 9:04 am

With all due respect to the issue... geez, in't that headline just trolling for punchlines?!?


8 people like this
Posted by resident
a resident of Midtown
on Mar 2, 2018 at 9:48 am

@dos quads - you make it sound like dementia is a dirty word and people with that disease should be ashamed. I am sure that a large part of this project is bringing the issues out into the open so people with the disease and their families are not afraid to talk about it.


14 people like this
Posted by suggestion
a resident of Another Palo Alto neighborhood
on Mar 2, 2018 at 10:42 pm

Stop building stack and pack housing that only people with zero physical limitations can live in.

Make walkability mean you can walk safely and enjoyably (as opposed to whatever costs the most and makes driving unsafe and frustrating).


3 people like this
Posted by Joe
a resident of Another Palo Alto neighborhood
on Mar 4, 2018 at 1:08 pm

Dementia is not a "disease"--but an aging-related physical condition.

Dementia cannot be contracted from another person like the flu, or tuberculosis.


Like this comment
Posted by Steve Dabrowski
a resident of Duveneck/St. Francis
on Mar 4, 2018 at 4:09 pm

[Post removed.]


Like this comment
Posted by Wally
a resident of Crescent Park
on Mar 4, 2018 at 5:01 pm

[Post removed.]


15 people like this
Posted by Getting Grey
a resident of Charleston Gardens
on Mar 5, 2018 at 1:12 pm

As a long time resident of this fascinating city, I have had the unpleasant experience of spending a few years in a wheelchair trying to manouver around town. That was an eye opener on a personal level. For a city which prides itself in being green and at least a bronze medal in “city in which the most people bicycle to work”, our infrastructure for people with disabilities is abysmal.

I am now fully mobile and have been trying my best to help my gracefully aged father around town in his wheelchair. It fully understand the burden placed on the caregiver when people start to suffer dementia.

The distasteful reality is that most of us will suffer some degree of dementia in our lifetimes. Whether it js MCI, full blown Alzheimer’s, anything in the range of “age related Dementia”, or another sad and life draining disorder. Not addressing this issue in the community now is like not planning for your retirement. Given the level of stress some of us experience in our daily lives, it can often appear that we are already suffering. I hope that this event is broadcast and all the people in this city who can watch it do. If I had seen a discussion broadcast to my high school or earlier in my education, I think it would have helped me see the world from a more compassionate level.

Not focusing purely on “what the city did wrong” is a good start and I hope my introduction did not convey the idea that this is something which can be solved through governmental action alone.

Our neighbors, relatives, friends, coworkers, and all the people we see around town are the community which we need to cherish and assist. Everybody has had a bad day, blamed someone else, perhaps had a serious dispute with someone in the community. As we age, many of those negative emotions or experiences seem childlike and immature. So today, I hope that I and everybody can approach members of the community in realization that there are often problems which we do not know about that influence the behavior of others. Giving people a pass without letting the world walk all over you is possible with a little effort. At the end of the day I would rather forgive and be forgiven than go to bed angry.

The reason I am bringing this to a personal level within the community and not simply addressing the interactions of health care professionals, their clients, and the support system provided by individual fees or a tax base; those directly impacted at all points, is because the best thing that can be done to help people with any cognitive or emotional issues is to simply be a nice person.

When someone takes up space on the sidewalk with a wheelchair, smile and hope that people would move over for you. When you drop your keys or wallet and someone in the community tracks you down, shouts if nearby, or anonymously returns the item be grateful for all the people who surround you. Whether those you know on a first name basis or those who are practically invisible, recognizing that we are a community above the level of a simple social contract for mutual protection is the first step towards improving your life and the outlook of all around you.

I applaud anyone brave enough to talk to strangers about their cognitive impairment while using the word dementia. What comes around goes around. Wouldn’t you rather it be a smile than the adult for of bullying and ostracizing which we all see to often.

Thanks for taking the time to read this. I hope you have a wonderful day and that others are better for having interacted with you in this community of ours.


Like this comment
Posted by You dun goofed
a resident of Barron Park
on Mar 6, 2018 at 9:13 am

[Post removed.]


Like this comment
Posted by OR
a resident of Barron Park
on Mar 13, 2018 at 11:10 pm

Exactly Getting Grey,

...and when someone burns down your mom's house and dad's caregiver's contractor tells mom that she absolutely needs to rebuild the house by him and no one else, please, please, Sergeant Nic, please community, building department, step up and investigate. Please California State Licensing Board, please investigate. Report financial fraud. Please Palo Alto Online, San Jose Mercury, do a story on elder financial fraud.

Web Link
Web Link

Thank you


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