In 2014, the Alzheimer’s Association designated June Alzheimer’s
& Brain Awareness Month in order to support those with Alzheimer’s
and those caring for them, in addition to promoting early detection. This
year, the monthlong observance culminates on the summer solstice, June
21, with The Longest Day, an event offering individuals and groups the
opportunity to host private or public events in order to raise money and
awareness to support the organization’s continuing service.
Alzheimer’s kills more people annually than breast cancer and prostate
cancer combined. Almost 6 million Americans live with Alzheimer’s,
while another 16.1 million provide unpaid care for those with Alzheimer’s
or other dementias. Arizona has 140,000 individuals living with the disease
and the second-highest growth rate for Alzheimer’s in the country,
according to the Alzheimer’s Association.
There are, however, a number of nonprofits across the Valley offering support
and services. Whether it’s practical advice or just a chance to
socialize with others who understand what they’re going through,
help is available.
Duet: Partners in Health & Aging is a Phoenix-area interfaith nonprofit
that promotes health and well-being through services for homebound adults,
family caregivers, faith communities and grandparents raising grandchildren.
One way they do this is by partnering with the Alzheimer’s Association
and others in providing caregiver support groups. Though not exclusively
for caregivers of people with Alzheimer’s or other dementias, given
how isolating and thankless such work can be, the support groups can have
particular value for them.
“It really is important to care for the caregiver, not just the person
who received the diagnosis,” said Daniela Saylor, Duet’s family
caregiver services program manager. “It really takes a toll on the
quality of life of the caregiver. It has very serious health implications
for them and is directly tied to mortality rates as well.”
Another way Duet helps is through a 10-week video discussion series titled
“Finding Meaning and Hope.” This is produced in partnership
with Dr. Pauline Boss, a researcher whose work on the concept of ambiguous
loss is particularly relevant for Alzheimer’s caregivers.
“Even though we don’t say this is only for folks who are dealing
with Alzheimer’s or dementia, it’s especially helpful for
them because Dr. Boss touches on ambiguous loss, which is a type of loss
that caregivers experience when their loved ones are physically present
but psychologically absent, which tends to happen with Alzheimer’s
and dementia.”
The sessions begin with a roughly 20-minute video providing background
on specific issues or techniques. After the video, participants have a
discussion to further explore the topics. Led by trained volunteers, the
discussions are provided free-of-charge.
One group that recently partnered with Duet to host the discussions is
Smile on Seniors, a volunteer program run by Chabad Lubavitch of Arizona
that pairs seniors with volunteers for regular visits. Founded in 2009,
it serves those in assisted-living facilities and those who live alone,
offering a mix of companionship and access to group activities. Rabbi
Levi Levertov, the co-director of Smile on Seniors, said they were very
happy with the series and plan to host another 10-week session next year.
Another option for both caregivers and sufferers is Jewish Family and Children’sService’s
Memory Cafe. Started in Amsterdam in 1997, Memory Cafes provide people
with memory impairments and their caregivers opportunities for socialization
and activities. JFCS held its first Memory Cafe in November. It featured
a doo-wop-themed activity taught by Michelle Dionisio, a dance teacher
and aging services expert.
“I can tell you from the get-go, the very first one we had, people
showed up and you would think these people had known each other for 20
years,” said Kathy Rood, Jewish social services manager for JFCS.
“You could tell they were just hungry for socialization and they
didn’t feel out of place. It’s a place where they can feel
safe.”
The activities are designed so that all attendees can participate at whatever
level they feel comfortable with. Unlike the support groups, there is
no discussion of memory impairment.
“During these programs, no one ever mentions memory or dementia,
because the whole idea is it’s a time to be to be engaging, to have
fun and to not think about those problems,” said Janet Arnold Rees,
the creative aging coordinator for JFCS. “They’re absolutely
just such positive experiences.”
JFCS’ most recent Memory Cafe featured Jewish dancers and scholars
from Arizona State University who facilitated a mostly seated dance lesson.
However, at the event’s end, a very special moment unfolded.
“We ended by creating a tree of life with four people as a trunk
and they would hold out their arms,” Rees said. “Another person
would become a limb and each person would join hands so that everybody
was attached to the tree of life. We all then took two or three steps
inward, so that we were even closer.
“As we know, there’s no cure right now for Alzheimer’s,
but we can make the moments as positive as possible through programs like
these.” JN
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