Alzheimer’s Association is expanding its effective grassroots advocacy effort
from the national level to include state-level legislators. In Colorado, the
Association is recruiting Alzheimer’s State Champions to interact with each
state legislator at key times throughout the year to ensure they are well-versed
on the implications of any proposed laws that would affect Alzheimer’s families.
first Colorado Alzheimer’s State Champions is Ashly Johnson of Denver, a staff
member with the Denver Regional Council of Governments (DRCOG), a former intern
at the Colorado Chapter, and someone who has seen the effects of dementia in
her own family.
had dementia, which was not formally diagnosed, but we would go to see him
every day in the nursing home and when he was on hospice care,” said Johnson.
She wants to take those first-hand experiences and share them with elected
officials so that they understand the impact Alzheimer’s and dementia have on
the people who are in the community and experiencing this disease (caregivers
or persons with a diagnosis), their stories and struggles and experiences
deserve to be heard,” said Johnson.
on her internship at the Alzheimer’s Association while earning her master’s degree
in social work at University of Denver, she said: “I learned so much from taking
Helpline calls and sitting in on support groups, it is clear to me what we
should be working for through change. It’s important for people’s stories to be
heard. It’s important to educate people and start the discussion.”
her work with DRCOG, Johnson helps people who are living temporarily in skilled
nursing facilities and want to move back into the community. She helps them
explore options regarding housing, home and community-based services.
an overlap between what we do and the Alzheimer’s Association in terms of
caregiving, in helping ensure there’s support for caregivers and getting more
Medicaid beds, which is a step down from skilled nursing,” she said. “There is
a big overlap between older adults and people with disabilities and those
living with dementia. A lot of the same legislation serves both communities.”
has attended several Alzheimer’s Association advocacy days at the Colorado
Capitol, met as part of a group with state legislators, and introduced herself
to her newly elected state legislator, Julie Gonzales, to let Gonzales know
that she will be hearing from Johnson in the future about Alzheimer’s
disease-related issues in the future.
Alzheimer’s Association federal advocacy program has been enormously effective,
helping raise awareness of the disease in Congress. Over the past five years,
federal funding for Alzheimer’s research has more than quadrupled to a
projected $2.3 billion in the coming year.
director of Public Policy and Advocacy, Coral Cosway, notes that the state
champion initiative is an effort to create the same level of awareness on a
local level so that when legislation is proposed that can affect the quality of
life for persons living with dementia or their caregivers, Colorado legislators
can make decisions based on a clear understanding of the issues.
as a state champion doesn’t have to take a lot of time,” said Johnson. “For me,
the in-person meeting seems a bit intimidating, but contacts also can be done
through phone calls and emails. The key is letting your legislator know what’s
important to you as a constituent.”
Johnson, the true value of being an advocate is sharing her personal experience
with the disease.
everyone has an understanding of Alzheimer’s or dementia,” she said. “If you’re
going through it, you are the expert.”
more about volunteering as a State Champion for the Colorado Chapter of the
Alzheimer’s Association, contact Cosway at email@example.com or 720-699-9276. To
fill out an advocacy volunteer application, go to https://alzimpact.org/volunteer