Alzheimers Association of Northern California and Northern Nevada
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Teresa Mandella is co-chair of the Stockton Walk to End Alzheimer’s. She is walking in honor of her husband Frank, who was diagnosed with Alzheimer’s in 2010.
About Frank Frank worked for years in the mortgage business both as a broker and a loan servicing agent. After receiving his diagnosis, Frank retired, which gave them the chance to focus on other things. Teresa shared that he loved gardening and working on his 1973 Pontiac Firebird.
Frank and Teresa
As his Alzheimer’s progressed, Teresa was able to keep Frank at home until 2017. She decided it was time to move him to a memory care facility, where he currently lives.
When Frank was first diagnosed, Teresa was
selective with whom she shared what was going on in their lives. Being more of
a private person, she didn’t want to burden others with the changes in her life.
Taking back control After Frank moved to the memory care facility, Teresa found herself with more time. Teresa said she decided that “it was time to step up and do something that I could control, because you can’t control anything with Alzheimer’s.” She started a team for the Stockton Walk to End Alzheimer’s and joined the planning committee.
Serving on the committee “is a positive step
that’s making Alzheimer’s more public,” said Teresa. “I was trying to be
private and it’s not worth it. It’s a bigger issue than myself. I had to take
my own feelings out of it.”
Teresa has enjoyed being part of the
committee. “It’s a way to make something happen with teamwork and to make an impact,”
she shared. “It’s a fun way to work together for a worthwhile cause.”
Starting her team When Teresa first participated in the Stockton Walk, she joined team Walkers Making a Pointe. Her first Walk experience inspired her. “You’ll be amazed when you first approach the venue and see the purple balloon arches,” Teresa recalled. “It’s breathtaking to see how many people come to this. I almost cried ‘oh, I’m not alone!’”
Teresa and Frank at the Walk
This year Teresa decided to kick it up a notch and start her own team. She knew that friends from her women’s tennis group would support her, so she invited them to sign up. She now has 12 members on her team, Creating a Racket.
Starting a team gave
Teresa the chance to reach out to her friends. “Most of my friends know my husband
or know about our situation,” said Teresa. The best part about starting her own
team is, “being with my friends on Walk day and supporting what is meaningful to
us as a team.”
Asking for donations Email requests and Facebook fundraising have worked well for Teresa. She also likes the idea of filling out a hope card by getting a series of small donations. “It’s fun and you ask your friends to fill it out,” she said. “By the time you fill it up, you’ve raised $100!”
Walk day tip “Coming from a co-chair role, it’s amazing to see all of our hard work since January coming together on one day,” Teresa shared. She encourages Walk participants to “just soak it in and feel the energy of people coming together for a common cause.”
Her ultimate goal As with most Walk participants, Teresa’s main goal is to find a way to stop Alzheimer’s. “There is nothing that’s helping Alzheimer’s, while other diseases have treatments or can be cured,” she noted. “I hope that those walking on my team will spread the word, that it becomes a domino effect and that local Walks will continue to grow.”
Deanna Wong of
Walnut Creek first heard of the Alzheimer’s Association when she was helping to
care for her father, David. She saw firsthand how much the education and
support services helped her and her mother.
Deanna and her family have been
participating in the East Bay Walk to End Alzheimer’s for five years. Since
2015, Deanna has been a part of the Walk planning committee and is
currently the Marketing and Outreach chair. She recently shared her story with
The first signs It all started with my mom casually sharing with me that my dad was changing, and his behavior was “different” than it used to be. It was just little things.
Deanna with her father
Instead of paying at the
cash register he would open up his wallet so my mom could pull out his money. Instead
of ordering at a restaurant, he would have the same thing my mom was having.
But these little things eventually started to add up to a bigger picture.
My father was a proud man and was amazingly adept at hiding his symptoms. With him, there was never an acknowledgement that there was anything wrong, and certainly no openness to seeking diagnosis or treatment.
We were unable to seek treatment without his consent. This made everything extraordinarily hard as we watched him decline and struggle. To say that we were unprepared for our journey with Alzheimer’s is an understatement.
Concern for Mom, the primary caregiver As my father’s cognitive skills declined more, he became more confused, dependent, and needy. It became unbearable for my mom as she struggled to shoulder the burden of 24/7 caregiving.
Mom lived in a constant state of anxiety and stress. She became depressed at her circumstances. I began worrying more about my mom’s well-being than my father’s.
Finding support The turning point for us came after, in a move of desperation, I convinced my mom to attend an Alzheimer’s Association support group with me. Coming from an Asian culture, talking about our feelings to a group of strangers was the last thing we wanted to do, but our desperation for help was enough motivation to try.
Deanna and her family
As we went around the
circle sharing, I heard the stories of the people around me and recognized my
family’s story in theirs. These people were struggling with so many of the same
issues that we were experiencing.
By the time it was our turn to share, we found ourselves crying and sharing the burdens that we had been silently shouldering. We learned so much that day, as the group members shared recommendations on programs and services we should explore. It gave us hope that things could get better.
Reaching out, accessing resources The best thing was that we learned how to ask for help and not carry the burden alone. We called the Alzheimer’s Association 24/7 Helpline when we had situations that we had no idea how to deal with.
We reached out to resources to find relief for my mom: first to explore an adult day center, and eventually to find a memory care facility. Coming to the decision to move my dad out of his home was one of the most stressful things I have ever experienced. My dad received wonderful care from the staff, and I know that this decision ultimately saved my mom.
Why I volunteer for the Walk Why do I volunteer with the Walk to End Alzheimer’s committee? Because I hope that by sharing my experience I can help others the same way that others helped us. Alzheimer’s can be a very isolating disease for caregivers.
Deanna’s daughter, Abbie, holding the white flower at the Walk
It’s important for people to know that there is a community out there who understands what they are going through. I Walk because I truly believe in the programs that the Alzheimer’s Association provides. I am living proof that they work.
I know there will be an end of Alzheimer’s disease, but until that day, we need to support programs for families, caregivers, and those living with the disease today. Please join me in this fight for a world without Alzheimer’s.
Dr. Marcy Adelman’s experience caring for her mother and her concern for elders in the LGBTQ community led to her involvement with the Alzheimer’s Association. Both professionally and personally, Marcy is making a difference for families impacted by Alzheimer’s.
diagnosis for Mom
mother, Julie, had a series of small strokes in 2000 and wasn’t getting better.
While Marcy suspects that her mom had vascular dementia, Julie never received a
of diagnosis was difficult for the entire family, especially for Marcy’s
father, Ben. He was always positive with his beloved wife of 58 years.
Marcy’s parents, Ben and Julie
stopped encouraging and trying to motivate Julie. He wanted her to stay active
and keep caring for herself.
had recently retired, envisioned traveling with Julie. “He wanted to have that
life together with her,” Marcy recalled, “but I saw it getting further away
from them both.”
diagnosis, Ben didn’t understand the progression of the disease. It was hard
for him to come to terms with the changes in Julie.
witnessed many unnecessary trips to the emergency room. She also saw the
emotional pain and stress her father experienced as a caregiver.
wish In the summer of 2002 Ben suddenly became ill
and died. “His biggest wish before he passed,” Marcy shared, “was that we
keep Mom at home.”
children committed to fulfilling their father’s wish. After Ben passed, Marcy and
her four siblings provided and managed their Mom’s 24/7 care.
siblings took turns staying with their Mom and managing all of her
responsibilities. Julie died peacefully in her home in 2007, surrounded by
loving family and caring aids.
family’s experience led Marcy, already an LGBTQ aging advocate, to become a
dementia care advocate. “So many people don’t get a diagnosis,” Marcy said. “They
should have the chance to enjoy life as much as they can, while they can.”
early diagnosis, the person living with Alzheimer’s and their caregivers can
plan for the future and prepare for the personal challenges ahead. For people without a spouse or adult children, an early diagnosis offers
time to identify a trusted caregiver and make financial, medical and legal
personal experience as a caregiver also had a big impact on her. “It was a real
eye opener to see how much it took to keep my Mom comfortable at home,” said
Marcy. “I learned what it takes to take care of someone who has dementia. No
one living with dementia or their caregiver should ever have to do it alone.”
Francisco in the 1970s
feels fortunate to have lived in San Francisco during the gay liberation
movement. She moved to San Francisco in the early 1970s to live an out
been very close to her grandmother growing up, Marcy noticed an absence of
older adults in the community. “We were building an out community for the first
time,” Marcy recalled. “I couldn’t help but wonder where our elders were
and how to bring them into our lives.
me on a journey that has lasted all my adult life. I wanted to live in a
community that embraces every age and stage of life and that makes seniors central.”
Marcy founded Openhouse. This nonprofit provides LGBTQ welcoming affordable
senior housing and health and wellness services to San Francisco Bay Area LGBTQ
helps LGBTQ older adults overcome the unique challenges they face. It empowers LGBTQ
seniors to improve their health and well-being.
older adults are more likely than heterosexuals to be single, live alone
and not have children. Marcy wanted to use her family’s lessons to improve
services for LGBTQ elders living with Alzheimer’s and other dementias.
had five adult children to help her,” said Marcy. “I was concerned about who
would be there to care for LGBTQ older adults living with dementia.”
on LGBTQ elders with dementia In 2012, Marcy began to serve on the San Francisco LGBT Aging
Policy Task Force. This gave her the opportunity to ensure that LGBTQ older
adults living with dementia could access needed services and supports.
initiative of the San Francisco Department of
Aging had led to a plan for addressing future needs for dementia services. San
Francisco’s Strategy for Excellence in Dementia Care report was published in 2009.
reported that the LGBTQ community was significantly underserved when it
came to dementia care. “The study results formed the foundation for my work on
the Task Force,” shared Marcy. “It wasn’t a question of if the community was
underserved, but rather what to do about it.”
Aging Policy Task Force made recommendations in 2014 that led to the funding of
a new San Francisco LGBT Dementia Care Project. This project is a collaboration
among the Alzheimer’s Association, Openhouse and the Family Caregiver Alliance.
Marcy continues to serve on the project’s Advisory Committee.
goal was to develop an LGBTQ senior, dementia competent training for first
responders, health care professionals and senior serving agencies. Over
the past three years, staff have conducted 85 trainings for over 1,500
professionals in a variety of fields.
been a great partnership,” shared Marcy. “We are reducing barriers to care and increasing
access by ensuring that dementia services are LGBTQ-welcoming and culturally competent.”
with Alzheimer’s Association
working on the Task Force, Marcy had the chance to interview Alzheimer’s
Association staff. As Marcy participated in meetings with them, she learned
more about their work. As she saw the difference the organization was making,
she decided to get involved.
ago, Marcy joined the chapter Board of Directors. As part of the Diversity and
Inclusion Committee, Marcy has been working to expand services for LGBTQ,
Latino and African American communities.
Marcy, on right, with fellow board member at Advocacy Forum
several years, the Alzheimer’s Association has held a Latino Alzheimer’s Forum
in San Jose. Caregivers from all over the Bay Area attend the free event to
hear presentations in Spanish. Marcy and other board members have been
exploring how to offer a similar event in San Francisco.
with the Alzheimer’s Association has provided me an opportunity to work across
communities in a way I haven’t before,” Marcy noted, “and I really appreciate
that.” She finds it encouraging to see wider coalitions of groups working together
acknowledges that there is more work to be done. The double stigma of being
LGBTQ and having a diagnosis of Alzheimer’s or another dementia may keep people
from accessing services.
will not seek the help they need if they think they will be treated
disrespectfully,” commented Marcy. “The lesson learned from the HIV/AIDS
epidemic is that we need to bring Alzheimer’s and dementia out of the closet in
the LGBTQ community.
to insist we are treated with the dignity and respect we deserve. Programs such
as the LGBT Dementia Care Project are doing just that. Still, we will need a
wider network of community-based services to adequately respond to the needs of
efforts have already improved services for LGBTQ elders impacted by Alzheimer’s
or related disorders. Marcy looks forward to continuing to work to increase awareness
and reduce the stigma within the LGBTQ community.
Despite her young age, 13-year-old Hannah Jao from the South Bay has been volunteering to raise Alzheimer’s awareness and funds for over seven years. Recently, she wrote a poem expressing the difficulties faced by those living with Alzheimer’s and encouraging others to show compassion.
Hannah with Peining and Edie Yau at Chinese Forum
Deep Down, Never Gone By Hannah Jao
Life with Alzheimer’s is hard No one will ever say it is simple to live with Alzheimer’s People can mock as much as they want But they will never succeed in doing so Be it, do it, you are only hurting yourself, the person deep inside you Begging to come out and show the world who you really are As you should know, “Living with Alzheimer’s is hard enough” “They aren’t doing anything”, “Give them an extra burden” is what heartless people say But deep inside them, they know what it feels like Being mocked, being bullied and most of all, being ignored So do what you can, care for those in need Your actions, even if they are small, will be greatly appreciated Let the person deep down inside you spring out, let them show you who you really are Show the world what you are actually made of Take action, get involved
We asked Hannah what inspired her to write the poem. “I wrote this poem because I want the world to see how difficult it can be for someone living with Alzheimer’s disease,” she shared. “But even though they are different from most people, they deserve to be treated respectfully because it can be very hard and frustrating to live with this disease.
Hannah, with friends and family, volunteering at the Walk to End Alzheimer’s
“I have had experiences interacting with people living with Alzheimer’s from volunteering at the Alzheimer’s Association Chinese conferences and Walk to End Alzheimer’s events. I can tell that sometimes it is not easy for them to move around and talk to people like we do. So we should give them a chance, be patient with them and let them feel like one of us.”
Peining Chang, Hannah’s mother, has worked as a Community Outreach Manager with the Alzheimer’s Association since Hannah was a toddler. Peining recalls that from a very young age, Hannah has been vocal about how people could help those affected by Alzheimer’s.
Hannah with her potholder craft
Hannah has participated in the Silicon Valley Walk to End Alzheimer’s for several years. She often uses her craft skills to make items for her Walk fundraiser. Hannah has sold her headbands, bracelets and potholders to raise funds for the Alzheimer’s Association. At 2014 Walk, Hannah participated in the opening ceremony, representing advocates for families impacted by Alzheimer’s and related disorders.
Not only has Hannah participated in the Walk, but she has recruited her friends to volunteer as well. As last year’s Chinese Alzheimer’s Forum, Hannah used her bilingual skills to help out as a volunteer usher. She also helped to demonstrate some exercises for seniors during one of the presentations.
Here is one of Hannah’s early pieces on how she wants others to treat people who are living with Alzheimer’s or other dementias.
I want to help, by Hannah
“I hope that Hannah’s efforts continue to inspire more young people to take action,” shared Peining. “And we are grateful that she is blessed to grow up with all of her compassionate aunties and uncles at the Alzheimer’s Association.”
Arthur Chan moved from
Hong Kong to San Francisco to be able to legally marry. As part of a project to
increase dementia capable care for the LGBT community in San Francisco, Arthur
shares his personal experience with discrimination as he trains service providers.
Arthur Chan was working
as a clinical psychologist in a psychiatric hospital in Hong Kong when he met
Terrence. They fell in love and wanted to plan a life together.
Arthur and Terrence, on their wedding day
However, gay marriage is
not legal in Hong Kong. Arthur and Terrence decided to relocate to the United
Terrence, an American, has family in the Bay Area. The couple moved to San Francisco in October of 2016 and got married in November 2016 at San Francisco City Hall.
Alzheimer’s care was an important cause to Arthur, both professionally and personally. In his role as a clinical psychologist, Arthur conducted assessments and provided treatment to older adults with Alzheimer’s and other dementias.
His maternal grandmother, Chun, and paternal grandfather, Pedro, both lived with Alzheimer’s. Arthur was especially close to his grandmother.
As a child, Arthur often
spent time with his grandmother while his parents worked. As the youngest grandchild,
Arthur shared that she “spoiled me a lot.”
It was difficult for Arthur to leave Hong Kong. His grandmother was in the late stage of Alzheimer’s. Arthur felt guilty that he was so far away at the end of her life. But he knew that she would want him to be happy.
Improving care The San Francisco LGBT Dementia Care Project started in 2016. The goal is to better address the needs of LGBT seniors in San Francisco who are living with Alzheimer’s and related dementias or are caregivers.
Arthur and others have focused on training dementia care providers in a variety of fields. The trainings are free and continuing education units (CEUs) are offered. They have trained people from nursing, social work, family therapy, home care and residential care.
Participants learn how
to serve members of the LGBT community who are affected by dementia. Topics
focus on cultural humility, Alzheimer’s disease and best practices for working
with the LGBT community.
Over the past three
years, the team has provided 85
training sessions to over 1,300 individuals. Over 90 percent of participants
rated the training as good/excellent. Trainings have been offered in English,
Spanish and Cantonese.
“We treat everyone
Arthur has found that initially, many attendees are skeptical of the need for
training specifically focused on the LGBT community. Some mention that “all
communities should be equal” or that they “care for everyone in the same way.”
Arthur, giving a presentation
In the training,
Arthur and the other presenters share:
The history of discrimination and violence that many older LGBT adults have faced
That some members of the LGBT community who are living with dementia may relive the trauma of past violence or hate crimes as the disease progresses
How past negative experiences with healthcare or social service providers may impact their willingness to seek care and their trust in providers
Arthur shares his own
personal experience to help the attendees understand the impact of
discrimination. “I tell them that I came from a city where gay marriage was not
legal,” Arthur said. “I talk about how I personally experienced discrimination
and the impact it had on me.”
In his experience
conducting the trainings, Arthur has found most attendees to be very
open-minded. Many paid caregivers share that they haven’t had much training or
personal experience working with the LGBT community.
Giving individuals the
confidence to seek services In working with
members of the LGBT community who are facing Alzheimer’s, Arthur has found that
often they don’t know that there are resources to help them. They may also be
hesitant to seek help for fear of facing discrimination.
helps caregivers develop confidence in speaking to providers. Arthur shared a
story of a caregiver in his 90s, who is caring for his husband, who is living
At an appointment, the
doctor said, “you’re coming with your friend.” The caregiver felt offended that
the doctor assumed they were just friends. It made him less likely to want to seek
Arthur validates their
feelings and reassures the caregivers. Often they are used to hiding their
feelings or not questioning authority. Arthur helps them problem-solve and come
up with ideas on how they can handle similar situations in the future.
Project expansion In the second phase of the project, Arthur and colleagues are forming the LGBT Dementia Care Network. They are inviting other groups to participate in enhancing service coordination.
The group wants to make it easier for providers to refer families to organizations who are trained to serve the needs of the LGBT community. They have also rolled out an additional training on effective communication with persons living with Alzheimer’s who are part of the LGBT community.
Changing misperceptions in the Chinese community Besides his work on the LGBT Dementia Care Project, Arthur also provides education and support in the Chinese community. He has found that many in the older generations have internalized stigma about dementia.
When they notice signs in themselves or a loved one, they are reluctant to discuss it with others. Arthur works to correct the myth that dementia is a normal part of aging.
Arthur & co-worker, Xiaorong
In the Chinese culture,
people are often hesitant to question authority figures, including physicians.
Arthur empowers them to ask more questions and/or seek another opinion, when
Similar to his work in
the LGBT community, Arthur helps connect families with providers who have
demonstrated capacity to meet the family’s needs. “Agencies have services that
target the Chinese community,” Arthur has found, “but a lot of times, the
message doesn’t get to the community.” He helps connect families with service
providers who understand their culture and speak Mandarin or Cantonese, when
Providing the support they need Besides providing trainings, Arthur enjoys the opportunity to speak with individuals and families. He is able to provide care consultations, listening to their stories and providing support.
“It can be physically and psychologically draining to live with Alzheimer’s or care for someone,” Arthur comments. “I let them know that they are not alone. We’re here for them.
“I believe in the vision and mission of the Alzheimer’s Association. It really touches my heart and motivates me. I want to help create a world without Alzheimer’s.”
a lot of people, and when this happened to us, people just rallied around us,” Gloria
shared. “I can call upon any of them. But I don’t like to abuse the privilege
of calling them.”
Gloria also knows the importance of taking care of herself in her role as Arthur’s primary caregiver. She remains active in community programs, especially the health advisory committee.
my own sanity,” Gloria explains. I’m still involved in a number of things –
it’s important for my own mental well-being.”
meditates, goes for long walks. “I do what I need to be rejuvenated,” she adds.
“I can’t take long trips anymore — so I take short drives — figuring out what
the next steps are going to be to make Gloria happy. We want to keep the person
with Alzheimer’s happy and we also want to keep the caregiver happy.”
Patient, positive and realistic
a realist when it comes to Arthur’s prognosis. “I think I have a pretty healthy
outlook on this. I know it’s something that’s not going to get better,” she
says. “I make the situation as comfortable and best as I can. That’s what I try
“I’m not in denial. I have a couple of friends who are in total denial. And I think they’re just unfortunately making it worse for themselves.
“I have learned to be very patient and very flexible. When I keep the routine going, it seems to work better. But that isn’t possible every day. Life happens.”
Looking back on the first signs
Like so many others with Alzheimer’s, Arthur showed early signs of the disease prior to his formal diagnosis.
would leave his coffee cup full of hot coffee in a kitchen cabinet. He’d run
out to buy ice cream and then forget it in the car, leaving it to melt when he
forgot how to get to their favorite restaurant: “It got to the point of him
calling,” Gloria says, “and asking, ‘Now where am I going? And how do I get
After Arthur failed an initial exam required for long-term care insurance, he went to his doctor for additional testing. When they received Arthur’s Alzheimer’s diagnosis, Gloria was probably more prepared than many — owing largely to her active involvement in the local health advisory committee.
A forum for education
Americans represent a small population in San Mateo County, but Gloria says
health issues for her community were “off the charts.” That prompted her and
others to form the health advisory committee, with an emphasis on studying and
promoting prevention and screening.
covered the gamut of topics — Alzheimer’s, heart disease, diabetes — Bay Area
wide,” Gloria shared. “We devoted ourselves to educating our communities,
especially our communities of color.”
Helping herself through helping
After Arthur was diagnosed with Alzheimer’s. Gloria reached out to the Alzheimer’s Association and partnered to put together a three-part educational program.
Gloria is a strong advocate for the Alzheimer’s Association’s education and information programs, particularly the Living With Alzheimer’s and Savvy Caregiver education programs. She appreciates the efforts of the Alzheimer’s Association to ensure that materials and representatives are culturally appropriate for communities of color.
is committed to sharing what she has learned about caregiving with others in
the African American community. “I think it’s just going to take more people
like myself who are comfortable in talking about their loved ones who have
Alzheimer’s to get that message out to others to take advantage of the
resources,” said Gloria.
“It’s like how breast cancer used to be taboo to talk about. Then we started showing the faces of people in the community who are breast cancer survivors and it made a big difference. We just need to find ways to make that happen with Alzheimer’s — people who are willing to share, to put a face to the disease.”
Researchers are learning more about the experiences of lesbian, gay, bisexual, transgender and queer or questioning (LGBTQ) adults who are living with Alzheimer’s or are caregivers. One of the leading researchers in this field is Dr. Jason Flatt from UC San Francisco.
June 28, 2019 marks the 50th anniversary of the Stonewall uprising, a pivotal moment in the LGBTQ history. During this year’s Pride Month, LGBTQ baby boomers — nicknamed “The Stonewall Generation” — are being honored as trailblazers of the LGBTQ movement.
Jason and presentation participant
The number of LGBTQ seniors in the United States is increasing. By 2030 nearly 7 million LGBTQ people will be over aged 50.
The prevalence of Alzheimer’s disease in the LGBTQ community is still relatively unknown, but the Alzheimer’s Association estimates there are 350,000 sexual and gender minority older adults in the U.S. currently living with Alzheimer’s disease or a related disorder. That number is expected to increase to over a million by 2030 (McGovern, 2014; Flatt et al., 2018).
Depression in LGBTQ seniors
Dr. Jason Flatt of the University of California San Francisco School of Nursing is conducting one of the first studies on Alzheimer’s disease prevalence among LGBTQ seniors. His research has found that LGB older adults had higher rates of depression and other psychosocial challenges.
“This is concerning because we know that individuals with depression have a two- to three-fold increase in the odds of developing Alzheimer’s and related dementia compared to those without depression.” said Dr. Flatt. “We also know the LGBTQ community faces additional risks for social isolation and loneliness, as well as unique challenges around accessing inclusive care.”
Watch Jason discuss his research
Jason Flatt, PhD, MPH at AAIC: Dementia Prevalence in Sexual Minority Older Adults - YouTube
Needs of LGBTQ seniors affected by Alzheimer’s
LGBTQ seniors living with Alzheimer’s Disease face unique challenges. They often experience discrimination when seeking health care and aging-related services. LGBTQ seniors also lack access to caregivers and supportive services for their caregivers.
For example, LGBTQ seniors are twice as likely to not have a spouse or partner. They are also twice as likely to live alone and up to four times less likely to have children. This greatly limits the opportunities for family caregiving.
Tips for providing affirming services
According to Dr. Flatt, “This should encourage us to learn more about the needs of our aging LGBT community and provide more affirming and supportive services.”
This includes meeting people “where they’re at” and acknowledging who they are. It also requires changing medical forms, recognizing and utilizing pronouns, and acknowledging families of choice, whether that’s a partner or a group of friends.
As part of his work Dr. Flatt has engaged with Openhouse, a non-profit organization in San Francisco. They are expanding inclusive and affordable housing and health services for LGBTQ seniors. This includes caregivers and persons living with Alzheimer’s.
New research center focused on LGBTQI community
Due to the health care-related challenges they and others have faced, an LGBTQ person is less likely to look for and access services. They fear poor treatment due to their LGBTQ identity. They may also fear the stigma of being diagnosed with Alzheimer’s disease.
Dr. Flatt, discussing his research
Dr Flatt and his colleague, Annesa Flentje, are building the first lesbian, gay, bisexual, transgender, queer/questioning and intersex (LGBTQI) Research and Clinical Training Center at UC San Francisco. The goal is to better train healthcare providers on affirming care for the LGBTQI community.
This Center will also allow expand research on LGBTQI health, including finding out more about specific contributors to Alzheimer’s among LGBTQI seniors.
McGovern, J. (2014). The forgotten: Dementia and the aging
LGBT community. Journal of Gerontological Social Work, 57(8), 845-857.
Flatt, J. D., Johnson, J. K., Karpiak, S. E., Seidel, L.,
Larson, B., & Brennan-Ing, M. (2018). Correlates of Subjective Cognitive
Decline in Lesbian, Gay, Bisexual, and Transgender Older Adults. Journal of
Alzheimer’s Disease, (Preprint), 1-12.
One of the benefits of getting an early diagnosis of Alzheimer’s or another dementia is the ability to conduct legal and financial planning. This allows the person living with dementia to express their wishes for future care and decisions.
As an estate planning
attorney, Vivian Yuan has witnessed the value of early planning for the clients
she serves. But a recent death in the family has given her a first-hand look at
what happens when individuals don’t create a will or other legal documents.
How she came to
Vivian has had a diverse
career in the legal field, working as an attorney for the New York City Police
Department, a boutique estate planning firm, an accounting firm and an
investment bank. Over 10 years ago, she took a position at eBay and moved to
California. Three years ago, she started her own law firm focusing on tax and
estate planning for families and business owners.
Around the time she
started her firm, a family member in another state was diagnosed with
Alzheimer’s. As Vivian sought to educate herself about the disease, she found
the Alzheimer’s Association.
“I was impressed with the Alzheimer’s Association website,” shared Vivian, “including the depth of knowledge and how much information was available.” While on the website, she came across information on volunteer opportunities and reached out.
Vivian has also learned to give talks on brain health and an overview of the Alzheimer’s Association. Besides giving workshops in English, Vivian is also able to speak to audiences in Chinese.
One of Vivian’s most memorable presentations was for a group of caregivers. “That was the most emotional experience,” Vivian shared. “They have a lot more experience connecting with the person living with dementia than I do. They taught me – it was very impactful.”
Vivian acknowledged that
her own experiences have changed how she presents the legal planning workshop.
When she first started volunteering, she focused on the legal terms and
materials. But a recent personal experience has caused her to add more stories
into her talk.
In January, a family member passed away. Vivian had spoken to him about legal planning in the past, but a mental health condition caused him to resist planning. As Vivian helps his family settle the estate, the value of legal planning has become more personal for her.
Due to the lack of advance planning, the estate is subject to probate. Probate is the process used by the court to pay off debt and distribute the property of a person who has died. This time-consuming and costly process has been further delayed because the family member’s do-it-yourself will was laden with errors and vagueness.
also didn’t sign a legal release that would have given family members the right
to access his medical records after his death. As a result, the family is not
able to work through billing issues with the medical provider until the legal
representative has been appointed. This has caused more frustration for the
Vivian has found that most people don’t know that they can sign a HIPAA release to authorize medical providers to release medical and billing information to their loved ones, effective when the person becomes incapacitated and after death. This release would have been helpful for Vivian’s family.
In her recent workshops, Vivian has shared her family’s story as an example of what problems can arise when someone hasn’t planned in advance. “A lot of times it’s easier to tell them stories,” Vivian said, “then they can relate.”
What participants learn
Vivian enjoys connecting
with the audience and hearing their “aha” moments, where they realized
something they needed to do in their situation.
Vivian has heard
feedback from participants that before her attending her presentation, they
Advance estate planning should plan for illness as well as death
The value of Advance Health Care Directives & HIPAA releases.
A power of attorney terminates when a person dies.
If a person dies without a will, the laws of the state where the person resided control who inherits their property.
To have a say in who inherits one’s property, they must express it clearly in a will.
Even with a will, the estate may still have to go through probate, depending on the value of the estate.
If they use generic store-bought or downloadable documents, they need to make sure the language in the documents is in compliance with their state law.
Importance of planning
While legal planning is
important for all adults, it is even more important when someone is diagnosed
with Alzheimer’s or a related disorder. In this case, “the importance of early
planning is not just to put your words in writing,” said Vivian. “Alzheimer’s
is a disease where your legal capacity will decline over time. The best thing
is to plan ahead of time or as soon as you’re diagnosed.”
In her professional
role, Vivian has seen families miss the opportunity to plan. A few years ago, a
man in his 80s met with her, but never followed up to develop a plan. Last
month his son called Vivian.
The son said that his father had had a stroke and now has dementia-like symptoms. His father’s bills are piling up and decisions need to be made.
The son had found Vivian’s
card in his father’s files. He wanted to see if Vivian had his father’s estate
planning documents. Sadly, she had to tell him that his father had not created
His father no longer has
the capacity to make his own decisions. Without the legal authority to make
decisions for his father, the son has to go to court to seek conservatorship.
This would allow him to take responsibility for his father’s care and finances.
Vivian shared that this
process can be expensive, requires a lot of steps and can take a long time.
This is especially true if family members aren’t in agreement.
In the workshop, Vivian is able to explain the various documents and how they are used. She also discusses the importance of making sure that people know the rules for that particular state.
For example, in Nevada,
if the deceased person’s assets exceed $20,000, or if there is real estate
involved, probate is normally required. In California, if the person had a
gross estate over $150,000, the estate could be subject to probate.
information on living trusts, which offer a way for people to give instructions
for how their estate should be handled upon death. Depending on state law and a
person’s circumstances, a living trust may allow an estate to avoid probate.
Make sure documents are
valid for your situation
Sometimes people seek
low-cost or online resources to help with planning. Vivian cautions individuals
to ensure that the language in the forms match the laws for their state and
achieve what the individuals wants to achieve. Vivian noted that “a document
that worked for someone else may not work for you.”
Vivian met with a family
that wanted to do estate planning for their father, who had Alzheimer’s. A
daughter had previously obtained power of attorney for her father. But the
language in the document that she downloaded was broad and didn’t match the
specific language required by California law related to creating an estate
Interacting and sharing
Vivian has found her
volunteer experience to be “very gratifying.” Sometimes attendees will talk
with Vivian about their personal situation at the end of the workshop. Based on
their conversations, Vivian says, “I know that I was able to reach them.”
Participants in the legal and financial planning workshops echo Vivian’s comments on how attending the workshop helps them. Here are a few comments from participant evaluations:
“Very important planning information – love the handouts”
“Easy to follow with great printed format to follow and take notes. Very helpful for my needs”
“Very informative – able to create a ‘to-do’ list!”
Unexpected return from
When Vivian started
volunteering, she did it because she saw that the Alzheimer’s Association had a
need and she wanted to help out. She didn’t think about how she might benefit.
“I’m surprised at how
meaningful it has been to me,” shared Vivian. She has been moved by the stories
she has heard from caregivers. “It enriches me as a person by connecting with
It has also helped her
professionally. “The audience asks questions I haven’t considered,” Vivian has
found. “When I finish a presentation, I think about it for a while. When a
client comes in, they may ask similar questions.”
Encouraging others to
Through her volunteer
efforts, Vivian is able to tell individuals how legal planning can help persons
living with Alzheimer’s ensure that their wishes are followed. This can also
ease the burdens on their caregivers. She hopes that families will take the
lesson to heart and create (or update) their legal plans.
Vivian encourages others
to consider volunteering for the Alzheimer’s Association as a community
presenter. “If you like presenting, it‘s a great way to connect with people,”
Vivian said. And you don’t need to be an attorney. “There are many topics available
that you can learn to present.”
Here are a few of our upcoming free legal and financial planning workshops. You can find more educational programs at alz.org/norcal/events.
Legal and Financial Planning for Alzheimer’s Disease Thursday, June 6, 2019 10 a.m. – 12 p.m. Roseville Police Department, Social Services 1051 Junction Blvd., Roseville, CA 95678 Contact: 800.272.3900 Email: firstname.lastname@example.org
Legal Planning for Alzheimer’s Sunday, June 23, 2019 3:15 – 4:15 p.m. Jewish Community Center, Fisher Family Hall 3200 California St., San Francisco, CA 94118 Contact: Shiva Schulz, 415.292.1260 Email: email@example.com
Legal Planning for Alzheimer’s Wednesday, July 10, 2019 11 a.m. – 1 p.m. CPMC Davies Auditorium Castro & Duboce, San Francisco, CA 94114 Contact: Rachel Main Email: firstname.lastname@example.org
Financial Planning for Alzheimer’s Wednesday, July 17, 2019 11 a.m – 1 p.m. CPMC Davies Auditorium Castro & Duboce, San Francisco, CA 94114 Contact: Rachel Main Email: email@example.com
Financial Planning for Alzheimer’s Disease Thursday, July 25, 2019 1:30 – 3 p.m. Palo Alto Medical Foundation, Main Building, 3rd Floor, Jamplis Rooms BCDE 795 El Camino Real, Palo Alto, CA 94301 Contact: Rochelle Rice, 650.853.2960 Email: BreymaR@sutterhealth.org
The Longest Day Date: June 21, or whenever you want Length: Up to you Location: Wherever you want Number of team members: One or more Type of event: Whatever you enjoy Number of events: As many as you want Purpose: Raise funds for Alzheimer’s research, care and support
While the beauty of The Longest Day is its flexibility, sometimes that can make it a bit challenging to explain. In these short videos, Steven Krzanowski, The Longest Day Manager, will help you learn how to get started. Together, we can get closer to our ultimate goal: the first survivor of Alzheimer’s.
What is The Longest Day?
What is The Longest Day? - YouTube
What types of activities are others in our chapter doing?
Fundraising Ideas - YouTube
Having a birthday, anniversary, wedding or other special occasion? Ask for donations in lieu of a gift.
What's an easy way to participate? - YouTube
But how do I turn my hobby into a fundraiser? Steven helps Arthur figure it out.
But how do I turn my hobby into a fundraiser? - YouTube
The Longest Day is June 21. What if I’m not available that day?
The Longest Day is June 21. What if I'm not available that day? - YouTube
Register for The Longest Day by June 5 to get your t-shirt before June 21. Once you register, you will have access to an online participant center and a variety of tools to support you.
Our staff and volunteers are ready to answer your questions and give you tips. For additional information, reach out to Steven Krzanowski, The Longest Day Manager, at 415.463.8507 or firstname.lastname@example.org.
When people find out that we work for the Alzheimer’s Association, they often ask questions about the disease or share their personal stories. Many of our staff give presentations or staff outreach events on evenings or weekends. Often we recruit family and friends to volunteer at events such as the Walk to End Alzheimer’s.
Vicki Reinhold is a Family Care Associate in our Fresno office. She recently shared a story in our staff meeting on the impact her efforts have had on her nine-year old daughter. Vicki was kind enough to let us share her story.
Vicki and Abby at the Fresno-Clovis Walk to End Alzheimer’s
My name is Vicki Reinhold. My nine year old daughter Abby has seen me representing the Alzheimer’s Association at multiple community events. She has also visited our Fresno office from time to time.
If Abby hears someone talking about Alzheimer’s when we are out and about, she will pull at my arm and say, “Mom, you can help them.” In those moments, I wish that it were that easy for everyone to get connected to our services.
One day Abby and I were sitting on the couch at home when she handed me a drawing. We talked through the details in the drawing out loud.
I said, “so you are holding someone’s hand who needs our help and you are leading them to the Alzheimer’s Association.” She replied yes.
I read out loud the sentence she had printed at the bottom of the drawing, “Help people who have Alzheimer’s so follow me to the Alzheimer’s Association.” She said, “yes and I wrote, made by a little girl named Abby. She is 9 years old.”
Abby and Stella
My heart was warmed and I felt re-energized as I looked at the drawing. I realized that Abby had learned the value of our work, not just what I do, but what the entire organization does.
At a time when it is critical to reach more people to raise awareness, provide education and link those impacted by Alzheimer’s to our services, I was encouraged by my daughter’s message in her drawing. I was thinking of a spot to pin this inspiration in my office, when Abby told me that the drawing was for Stella De La Peña, our Regional Director.
I admit that I was a little surprised that the drawing was not for me. However, I embraced the connection Abby has with the Fresno office and the value she sees in the work that we all do in this organization.