Older adults, including those living with dementia and long-term care
residents, should be part of disaster preparedness efforts, the
Alzheimer’s Association and its advocacy affiliate, the Alzheimer’s
Impact Movement, told members of the US Senate Special Committee on
Aging in comments submitted in response to the committee’s May 14 hearing on disaster preparedness and the unique related challenges facing older adults.
The organizations said that it is important to address the challenges
that face people living with dementia and those providing care for them
during public health emergencies. They offered several recommendations.
Specifically, the organizations called for improved response
coordination and recommended that each state designate a specific point
person on long-term care issues to liaise with the federal government
during a crisis.
“Oversight for separate long-term care settings falls to different
federal and state agencies, which can make it difficult to coordinate
efficiently during a public health emergency,” the statement read,
adding that a point person would provide a more coordinated, tailored
response to long-term care communities.
The organizations also called for public health preparedness and
response targeted toward people living with Alzheimer’s disease and
their caregivers. Many state public health departments lack the
expertise to address this population, which became evident during the
COVID-19 pandemic emergency response, according to the groups. Public
health agencies should seek input from people living with dementia,
caregivers and experts on cognitive impairment, according to the
recommendations.
The groups added that emergency responders and shelter staff members
also would benefit from specific training on the signs and symptoms of
dementia and other cognitive impairments. In addition, they said, the
Centers for Disease Control and Prevention should have a gerontologist
or geriatrician within the infectious disease national centers to
communicate on emergency preparedness and response.
“This will help ensure readiness in how to respond to the unique
needs of seniors and people with Alzheimer’s and other dementia when a
new threat arises,” the statement read.
As a result of emergencies, disasters and crises, care transitions
can be difficult for people living with dementia, the Alzheimer’s
Association and AIM said. Therefore, the groups support the expansion of
telehealth access — as well as the expansion of Medicare and Medicaid
coverage for telehealth services — to allow people living with dementia
to avoid unnecessary travel that could further compromise their physical
health, as well as help caregivers managing medical needs or behaviors.
Finally, the organizations said they support the ability of nurse
practitioners and physician assistants to order Medicaid home health
services.
According to the Alzheimer’s Association, 27% of older adults with
Alzheimer’s or other dementias who have Medicare also have Medicaid
coverage, compared with 11% of individuals without dementia.
The Alzheimer's Association released a list of gift recommendations for
individuals with the disease at every stage of dementia. Experts offer
insights on how to navigate the holiday amid dementia.
The top gifts this holiday season might not be the best fit for
everyone, especially those who have Alzheimer’s disease. There are seven
million Americans living with the disease, according to the Alzheimer’s
Association – and some gifts might not be appropriate depending on a
person's stage of dementia.'Family members and friends may have to
rethink their gift-giving strategies when shopping for someone living
with dementia,' Elizabeth Edgerly, Ph.D.
trackers, in the form of
watches, bracelets or key rings, can offer an individual their
independence while keeping them safe. 5. 'Memory' calendars can be
filled with family photos and pre-marked with important dates. Gifts for
middle to late stages 6. Music playlists can be compiled with your
loved one’s favorite artists and songs. 7. Comfy, loose-fitting
clothing, like sweat suits, slip-on shirts, night gowns, bathrobes and
lace-free shoes, are easy to throw on, remove and wash. 8.
Soothing
gifts like a soft blanket or handheld massage ball can help relieve
stress and anxiety. 10. 'Adaptive' dining accessories — like no-spill
cups, plate guards and silverware with handles — encourage independence
at the dinner table. Gifts for engagement 11. A memory phone can store
photos with names and contact information. 12. Puzzles and activity
books stimulate the brain and promote cognitive sharpness. 13.
Make
plans to spend time with the person doing the things they like,' she
advised. 'It can be playing a game, looking at old pictures, watching a
favorite movie or going out to eat.' 'The adage that the best things in
life are free is true. Spending time and engaging the person in
meaningful ways can be the best gift of all.'
The
Task Force launched in 2019 and consists of more than 55 different
organizations and more than 100 individuals in the public, private, and
nonprofit sectors.
“The
Alzheimer’s Association Michigan Chapter has been a tireless advocate
for our seniors, leading the way in making our state a place where
residents can grow older with the assurance that their rights and
freedoms will be preserved,” Nessel said. “I am honored to receive this
award and am proud to have the Alzheimer’s Association as part of the
Elder Abuse Task Force.”
"It
was an obvious choice for the Alzheimer's Association Michigan Chapter
to recognize Attorney General Dana Nessel with this year's Excellence in
Leadership award," said Jennifer Lepard, President & CEO of the
Michigan Chapter. "Ensuring the state’s most at-risk populations are
safe and secure has been one of her core initiatives, most notably
through the Elder Abuse Task Force, on which the Association also works.
Through this initiative and additional extensive work in her time in
office, Attorney General Nessel has proven she is a true advocate for
the state’s most vulnerable, including those living with Alzheimer's and
dementia."
It
is estimated that more than 100,000 older adults in Michigan are
victims of elder abuse and that less than half of all instances are
reported to authorities. Michigan residents seeking elder abuse
resources are encouraged to call 800-24-ABUSE (22873), or 855-444-3911
to report suspected elder abuse.
Joanne
Pike, DrPH, is president and CEO of the Alzheimer’s Association and CEO
of its advocacy affiliate, the Alzheimer’s Impact Movement.
“Congress should consider the steps it can take at the federal level,
including expanding the necessary workforce and improving dementia
training standards and access,” as part of efforts to “help ensure a
quality direct care workforce that can meet the unique needs of our
nation’s growing number of Americans living with Alzheimer’s and other
dementia” in assisted living communities and elsewhere, the Alzheimer’s
Association and its advocacy affiliate, the Alzheimer’s Impact Movement,
said in comments submitted to the US Senate Special Committee on Aging for the record of the hearing it held Thursday, titled “Assisted Living Facilities: Understanding Long-Term Care Options for Older Adults.”
The entities also urged the committee to take steps to support states
in implementing and improving dementia training for direct care and
other workers in assisted living communities.
Thursday’s Aging Committee hearing was its first one focused strictly
on assisted living in more than 20 years and was held in response to
recent articles in The Washington Post and the New York Times and KFF Health News.
The Post articles, published in December, reported on the deaths of
several senior living residents with dementia who had eloped from
communities. The Times / KFF articles, published in November, reported
on an assisted living industry pricing structure that adds fees on top
of basic charges to cover additional services, as well as rate increases
and the for-profit status of most providers.
The committee now awaits responses from three large senior living operators
about their efforts related to safety, staffing and pricing; has asked
the US Government Accountability Office to study federal assisted
living-related spending as well as industry pricing and transparency;
has announced a website and email address
where consumers can share their bills and their experiences interacting
with providers; and is pondering increased federal involvement in the
industry.
The Alzheimer’s Association and Alzheimer’s Impact Movement focused on dementia and workforce issues in their eight-page letter.
“Assisted living is one of the fastest-growing options for
residential housing for older Americans,” the groups said in their
letter, noting that there are approximately 30,600 assisted living
communities with almost 1.2 million licensed beds in the United States
today. Thirty-four percent of assisted living have Alzheimer’s disease
or another type of dementia, they said (the federal government estimate is higher, at 42%).
By 2050, the organizations said, it is projected that the Medicare
and Medicaid programs will be paying $1.1 trillion toward the healthcare
and long-term care of people living with dementia as the number of
people in that group increases.
“While the prevalence of Alzheimer’s disease increases, so does the
need for well-trained members of the paid dementia care workforce,” the
groups said, noting that the industry already is experiencing workforce
challenges.
Fifty-eight percent of assisted living communities care for residents
who are living with dementia, and 19% have a dementia care unit, the
Alzheimer’s Association and Alzheimer’s Impact Movement said. They
added, however, that “most states do not specify minimum staffing levels
or ratios in dementia care.”
Although noting that “there is limited research identifying an
optimal ratio of staffing,” the groups said that literature “verifies
that there is a clear association between higher levels of licensed
staff and higher quality of care” and that “there is an association
between higher turnover rates and lower quality of care.”
Beyond potential mandatory staffing requirements, however, “there is a
growing awareness of the need to deploy staff in a matter that aligns
with resident routines and needs,” the organizations said, noting that
recommendations made in a 2020 research article about staffing levels in nursing homes could “inform facilities and policymakers.”
Support of state efforts encouraged
Regulation of staff training in long-term care primarily occurs at
the state level, the groups said, but they encouraged the Aging
Committee “to consider proposals that support state health departments
in implementing and improving dementia training for direct care workers
and their oversight of these activities.”
Training-related policies, the Alzheimer’s Association and
Alzheimer’s Impact Movement said, should be based on competency and
should target providers in a broad range of settings. Additionally, the
groups said, such policies should enable staff members to provide
person-centered dementia care “based on a thorough knowledge of the care
recipient and their needs, advance optimal functioning and high quality
of life and incorporate problem-solving approaches into care
practices.”
The organizations also urged the Aging Committee to support state
dementia-related efforts by calling for any training curriculum to be
delivered by knowledgeable staff members who have hands-on experience
and demonstrated competency in providing dementia care, for continuing
education to be offered and encouraged, and for training be portable,
meaning that workers have the opportunity to transfer their skills or
education from one setting to another.
Efforts to improve the quality of dementia care in three states are
“instructive,” the Alzheimer’s Association and Alzheimer’s Impact
Movement said, adding that they could provide the committee with
additional examples on request.
In Georgia, House Bill 987, signed into law in 2020,
established memory care licensure and dementia training requirements
for all direct care workers and all other staff members in memory care
centers. Among other things, the law requires all assisted living
communities and personal care homes that offer memory care to obtain a
certificate to operate and to have at least one dementia-trained direct
care staff member for every 12 residents during the daytime and one such
staff member per 15 residents overnight, based on a monthly average.
All staff members must undergo four hours of dementia training within
the first 30 days of employment, and all direct care staff members must
obtain at least 16 hours of specialized dementia training within their
first 30 days of employment and eight hours of dementia training each
year thereafter. The law specifies the topic areas to be covered in the
training.
In Indiana, Senate Bill 169,
introduced in 2021, requires assisted living communities that provide
memory care services to disclose their dementia-specific care, staffing
levels and transfer/discharge policies. And Senate Bill 353,
introduced in 2022, establishes dementia training standards for home
health aides caring for people who are living with dementia, requiring
three hours of annual continuing education about dementia and six hours
of initial dementia training for newly hired individuals.
In Pennsylvania, regulations updated in 2022 require skilled nursing
facilities to provide dementia training as part of all staff members’
orientation.
Dementia Care Practice Recommendations detailed
The letter also detailed the Alzheimer’s Association’s Dementia Care Practice Recommendations
for professional caregivers, released in 2018, which contain goals
related to person-centered care; detection and diagnosis; assessment and
care planning; medical management; information, education and support;
ongoing care for behavioral and psychological symptoms of dementia, and
support for activities of daily living; staffing; supportive and
therapeutic environments; and transitions and coordination of services —
and the letter relayed what assisted living communities “should” do
based on the recommendations.
Regarding staffing, “[a]n adequate and well-trained workforce is
fundamental to providing quality dementia care,” the organizations said,
adding that, based on the workforce-related recommendations, assisted
living communities should:
provide a thorough orientation program for new staff members, as well as ongoing training;
develop systems for collecting and disseminating person-centered information;
encourage communication, teamwork and interdepartmental/interdisciplinary collaboration;
establish an involved, car[ing] and supportive leadership team;
promote and encourage resident, staff and family relationships; and
evaluate systems and progress routinely for continuous improvement.
To maintain a strong dementia care workforce, the groups said, assisted living communities should:
have staffing levels adequate to allow for proper care at all times, day and night;
ensure that all staff members are sufficiently trained in all aspects of care, including dementia care;
adequately compensate staff members for their work;
provide a supportive atmosphere for staff members that appreciates
their contributions to overall quality care, because improved working
environments will result in reduced turnover in all care settings; and
ensure that staff members have the opportunity for career growth.
“Additionally, we know that consistent assignment is an important
component of quality care for staff working with residents with
dementia,” the Alzheimer’s Association and Alzheimer’s Impact Movement
said.
“We look forward to working with the Committee and other members of
Congress in a bipartisan way to advance policies that will ensure
individuals living with Alzheimer’s and other dementia have adequate
access to high-quality assisted living and all long-term and
community-based care services, especially as the population of Americans
living with dementia continues to grow,” the letter concluded.
The Alzheimer’s Association, Long Island Chapter is hosting a free,
virtual legal and financial planning conference from March 15–17.
Alzheimer’s is the most expensive disease in the country, but proactive
planning can lessen its strain on families.
The three-day conference will feature presentations by estate
planning and elder law experts, who will explain how to put plans in
place and ways to access legal and financial resources.
Topics covered will include: making legal plans that fit your needs,
practical strategies for making a long-term care plan, tax deductions
and credits, and government programs that can help pay for care. The
third day of the conference will be in Spanish.
Elizabeth Robles, community education manager at the Alzheimer’s
Association, says “We know the cost of Alzheimer’s can be a burden for
families. Putting plans in place early and getting the most out of
federal and state programs can make a huge difference. We organized this
conference to help our community in Long Island and people across New
York state navigate these complex issues and get answers from local
experts.”
Legal & Financial Planning Conference
Monday, March 15, 11 a.m. to 1 p.m.
• Advance Directives, Power of Attorney and Guardianship — Irene Villacci, Esq.
• Basics of Estate Planning and Secure Act — Britt Burner, Esq.
Tuesday, March 16, 11 a.m. to 1 p.m.
• Asset Protection and Nursing Home Medicaid — Vivian Garrastegui, Esq.
• Community Medicaid — Brian Tully, Esq.
Wednesday, March 17, 11 a.m. to 1 p.m. (Presentations in Spanish)
• Asset Protection and Nursing Home Medicaid — Vivian Garrastegui, Esq.
• Community Medicaid — Liz Lambert Gullo, Esq.
The conference is free and open to all, but advance registration is
required. It has been made possible through the generous support of
Stefans Law Group, Humana, and The Bristal. To register, call
800.272.3900. The Alzheimer’s Association, Long Island Chapter offers a
range of free programs and services for people in Nassau and Suffolk
counties. For information, visit its website at alz.org/longisland.
Some personality traits may be linked to certain pre-dementia conditions, a study concluded.
Researchers recently
published in the Journal of the American Geriatrics Society a study
that looked at five personality traits — neuroticism, extraversion,
conscientiousness, agreeableness, and openness — and their link to
certain pre-dementia conditions, namely motoric cognitive risk (MCR), which is characterized by
“the presence of cognitive complaints and slow gait in older
individuals without dementia or mobility disability," and mild cognitive
impairment (MCI) syndromes, or a “slight but noticeable and measurable
decline in cognitive abilities, including memory and thinking skills,”
as defined by the Alzheimer's Association.
The
study involved 524 adults in Westchester County, New York, who were
over the age of 65 and had not been diagnosed with dementia at the
beginning of the study. The participants were observed for three years,
after which time 38 of them developed MCR, while 69 developed MCI, according to the study.
Openness was associated with a 6 percent reduced risk of developing MCR, the study found.
(iStock)
The researchers found that neuroticism was associated with a 6
percent increased risk of developing non-amnestic MCI, or when “memory
remains intact, but one or more other cognitive abilities — such as
language, visual-spatial skills, or executive functioning — are
impaired,” the researchers explained in a news release regarding the findings.
Openness, meanwhile, was associated with a 6 percent reduced risk of developing MCR.
The
researchers said while their findings did not determine a cause and
effect, they do “emphasize the importance of accounting for aspects of
personality when assessing for dementia risk” from a clinical
perspective, said study co-author Emmeline Ayers of the Albert Einstein
College of Medicine, in a statement.
"While more studies are
needed, our results provide evidence that personality traits play an
independent role in the risk for or protection against specific
pre-dementia syndromes," she added.
The research builds on
existing evidence of a link between certain personality traits and
cognitive decline, a doctor who was not a part of the study told Newsweek.
Official Music Video for "Forgotten Love' by Josh Card, from the forthcoming album "With A Heavy Heart".
Join the fight to end Dementia and Alzheimer's at http://www.alz.org or visit Alzheimer's Association.
ALBUQUERQUE,
N.M. - The number of New Mexicans living with Alzheimer's disease has
jumped up again. The Alzheimer’s Association released its latest report
on Tuesday. It shows 5.7 million Americans are living with the disease.
From 2000 to 2015, deaths from Alzheimer’s went up 123 percent in the
U.S. New Mexico numbers are among the worst.
"It is growing faster in New Mexico than it is in other parts of the
country," said Gary Giron, Executive Director of the New Mexico Chapter
of the Alzheimer’s Association.
The 2018 report
says 39,000 New Mexicans who are 65 and older are living with
Alzheimer’s. That is up 1,000 from 2017, and researchers predict it will
increase to 53,000 by 2025.
"It is a tsunami-like wave that is hitting New Mexico and affecting more and more families," said Giron.
Alzheimer’s often has a painful, draining impact on family members
and caregivers. Giron says it can lead to financial burdens for the
family and even health problems for the caregiver.
"The person with the disease exits the workforce, and then you still
have the caregiver continuing to be able to run that family,” said
Giron. “But over time, the burden of the disease takes more and more
time from that caregiver and makes their job harder and harder, so what
starts as a five hour job a week, turns to be a 40 hour job, a 50 hour
job, a 60 hour job where they're not getting sleep, they're not taking
care of themselves and it's hard for them to make ends meet.”
New research ties significant cost savings to an earlier diagnosis.
Giron says for that to happen, the nation and the state need to start
talking about Alzheimer’s as a public health crisis.
"We need to train our physicians to be able to be comfortable to make
an early diagnosis, to be able to make referrals to the right kind of
supportive services, to be able to get folks involved with all of our
free services here at the Alzheimer's Association, to get a care
consultation so that they can be able to navigate their way through this
disease,” said Giron.
The Alzheimer’s Association is always hosting events and fundraisers
so they can continue offering free support as families try to navigate
their way through a deadly, costly disease with no proven treatment or
cure.
"It really is a crisis in New Mexico that we have to deal with.
