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