Dementia patients, caregiver spouses share 'relaxation days' at the Memory Cafe

On a recent weekday afternoon, a small group of older couples is gathered in a private room at Butera's Restaurant of Sayville.

Lorraine Barounis and Richard Mattes, known as the Sweet Lorraine Duo, are charging through a playlist of popular hits that span a few decades: "All the Way," "Fools Rush In," "Cathy's Clown," "Brown Eyed Girl."

The guests are singing along, clapping to the beat, bobbing their heads, tapping their feet. At the end of each song, there's applause and shouting, "Whoo whoo!" By any measure, these seniors are rockin'.

For a couple of hours once a month, they're like other long-married couples who enjoy music and memories of their shared lives. But there's a special component to this group: Each couple has one spouse who is suffering from Alzheimer's disease or another form of dementia.

The music they're enjoying is part of an unusual program called Our Place Memory Cafe, created through a partnership between The Bristal Assisted Living communities and the Ronkonkoma-based Day Haven Adult Day Services.

Launched earlier this year, the Memory Cafe was designed to provide a free monthly venue where people with memory loss and cognitive impairment, and their caregivers, could socialize in a comfortable, supportive environment in the company of others who face similar challenges. Each cafe gathering features entertainment — music, poetry, art therapy or games — with breaks for dessert and opportunities for everyone to chat. While a number of other local "time away" programs offer respite and support groups for family caregivers of the elderly, the cafe at Butera's focuses on keeping couples together for an afternoon out.

'Total relaxation'

"It's a total relaxation day," says Jean Cusimano, 80, of Ronkonkoma, a regular attendee of the cafe gatherings, with Joe Cusimano, 81, her husband of 58 years, who was diagnosed with dementia about three years ago. "The entertainment and dessert are great, but more important is being together with people who are in the same boat — with a little pleasure."

Memory Cafes, also known as Alzheimer's Cafes or Dementia Cafes, have been around for a while, but the program at Butera's appears to be the first on Long Island.

"Unfortunately, with this disease, social isolation can become a reality," says Kate Schneider, a programming specialist for Reflections, The Bristal's unit that provides care for adults with memory-related cognitive disorders at its nine assisted-living communities on Long Island. "Friends find it more and more difficult to visit, and getting out to socialize can become a challenge." At the same time, Schneider says, "It's equally important for people caring for a loved one to have a place to relax, share thoughts and emotions, and find answers."

The cafe concept was developed in the Netherlands by Bere Miesen, a clinical geriatric psychologist. In his practice, Miesen learned that families rarely had discussions about the disease, so he founded the first Alzheimer's Cafe in 1997 to encourage open communication.

In 2000, the Alzheimer's Cafe was introduced in the United Kingdom, and eight years later, the first U.S. cafe sprang up in New Mexico. Today, there are dozens of similar cafes across the country.

The American-style cafe focuses on entertainment and social interaction among those with dementia and their caregivers. At Butera's, educational handouts are available and staff members from both Day Haven and The Bristal are there to answer caregivers' questions. "But mostly," Schneider says, "it's a forum to give people a chance to sing some songs, play a game or two, talk and laugh. The key is comfort — creating a situation where you can feel normal."

Indeed, caregivers often say the hardest part for them is the loss of the "normal" interactions they once had with their loved ones. Instead, their days are full of difficult and tedious tasks.

"It's a tough thing," Jean Cusimano says. When Alzheimer's strikes, "You feel you've been robbed." She and her husband always had "wonderful communication," she says. A retired insurance salesman, Joe loved people, she adds. "It's so frustrating when he's trying to remember something. He becomes nervous and anxious."

The biggest challenge for her as a caregiver — both physically and mentally, Cusimano says — is "managing your day to get everything done. You have to educate yourself on finances and everything. You hold the ball in your hands alone."

Like Cusimano, most caregivers acknowledge the risk of being overwhelmed. "I needed help and I wasn't asking for it," says Millie Featherstone, 71, of East Patchogue, who attends Butera's Memory Cafe with her husband, Walter, who is 75. He was first diagnosed with dementia about 10 years ago, and it's become more difficult to take care of him in recent years, his wife says. "The truth is, you can't handle it yourself."

Forming connections

Caregivers often need a wide support system, including in-home companions and aides, adult day care programs and help from family members. Many, like Cusimano and Featherstone, attend monthly support groups offered by Day Haven or other organizations.

Caregivers also end up caring for each other through the Memory Cafe. Tom Maher, for example, came to Butera's after Millie Featherstone started taking her husband as well as Maher's wife, Diane, to the monthly get-together. (Diane Maher was diagnosed with dementia about two years ago.) The Mahers — Tom, 74, and Diane, 73, of Blue Point — and the Featherstones are old friends. The couples started dating at the same time; the Mahers were best man and maid of honor for the Featherstones' wedding.

The cafe is "like going to a support group without going to a support group," Tom Maher says. Millie Featherstone adds, "Caregivers know what you're going through. So many people can be down with this disease, but here, everybody is up."

At each Memory Cafe, participants are encouraged to interact with the entertainers and each other. "It's an opportunity for caregivers and their loved ones to focus what they're able — not unable — to do together," Schneider says.

At the recent cafe, for example, several couples took to the dance floor when the Sweet Lorraine Duo sang a soulful rendition of "For Your Love." And Joe Cusimano took center stage and offered his version of "My Way."

Active involvement

Since the Memory Cafe began last spring, it's grown from eight to about 20 participants. Schneider says that groups of 10 to 12 couples are generally the optimal size for such programs, to maintain a sense of intimacy and provide quiet time for conversation.

"The human factor is what's most important right now in dealing with the unpredictable lives of people with dementia," says Suzanne Paolucci, an elder and chronic care consultant who chairs the Day Break Adult Day Care and Senior Programming Committee at The Life Enrichment Center at Oyster Bay. "Whether it's day care, home care or a cafe, the best thing we can do is keep people active and involved, in an environment where they can interact but not feel judged or overwhelmed."

At the Memory Cafe, it is music that often helps create that comfort. Some participants may have trouble speaking, but, "when the music comes on, they sing every word," Schneider says. The closing number for the cafe this time is Neil Diamond's "Sweet Caroline." In unison, the couples are clapping, swaying and singing the party-version chorus:

Sweet Caroline

Good times never seemed

so good

So good! So good! So good!

When the song ends, couples linger a few minutes, chatting, exchanging goodbyes.

"It's fantastic," Tom Maher says. "The atmosphere, the laughing, the smiling. Just to watch my wife's face, it's unbelievable."

MEMORY CAFE MEETS MONTHLY

Our Place Memory Cafe meets on the third Tuesday of the month at Butera's Restaurant of Sayville, 100 S. Main St., from 1:30-3:30 p.m.

Here are dates for upcoming gatherings: Oct. 21, Nov. 18, Dec. 16

There is no fee for couples who attend, but reservations are required. Call Lori Maldavir at Day Haven Adult Day Services, Monday-Friday, at 631-585-2020, ext. 261, or email OurPlaceMemoryCafe@gmail.com.

CARING FOR CAREGIVERS

When Nina Dobris talks about the challenges facing caregivers of Alzheimer's disease patients, she says it's best for them to keep in mind the instructions given to airline passengers when the cabin pressure drops: Put your oxygen mask on first, before you try to help those around you.

"Caregivers don't take care of themselves," says Dobris, a geriatric care manager with North Shore-LIJ Circle of Care program, which provides services to help the elderly at home. "They suffer and take care of themselves last."

Dobris notes that many spouses feel guilty about not being able to handle caregiving responsibilities on their own. They don't want to bother their adult children because "they have their own lives," or they're simply too proud to ask for help.

"You can't be a good caregiver 24/7," says Dobris. "You need some downtime." She exhorts caregivers to "let go of things that you can't control. Stop feeling guilty. Go exercise, get physical therapy, go to a spa — do things to make sure you have some sort of respite." And when you ask for help, she says, be specific: "Tell people, 'This is what I need you to do for say, two hours on Thursday.'"

Finally, caregivers should consider using the growing number of services available from local governments, social services agencies, senior centers and adult day care programs. Some examples:

RESPITE SERVICES

EAC Inc.: 516-539-0150, ext. 217; eacinc.org; Hempstead
EAC's senior respite program provides in-home companions for older adults with chronic disease or dementia. There is a sliding fee for ongoing two- to six-hour, one-day-a-week visits.

Long Island Alzheimer's Foundation: 516-767-6856, ext. 17; liaf.org; Port Washington
The Alzheimer's Companion Program, funded by the Nassau County Office for the Aging, offers two hours of in-home respite care every other week to families of persons suffering from Alzheimer's disease and related dementias. Suggested contribution based on ability to pay.

Suffolk County Respite Care Program: 631-321-8229, ext. 1229
Provides caregivers temporary relief from their duties. Suggested contribution based on ability to pay.

CAREGIVER SUPPORT GROUPS

Long Island Alzheimer's Foundation: 516-767-6856; liaf.org
Weekly support groups for caregivers facilitated by professional social workers. Groups provide education, coping strategies and community resources to assist in the caregiving role.

Caring for the Caregiver: 516-921-0755; caringforthecaregiver.org; Westbury
Nonprofit group offers Caring & Healing Circles in seven Long Island locations. Local caregivers meet for an afternoon or evening to discuss their experiences.

Alzheimer's Disease Assistance Center of Long Island: 631-632-3160; nwsdy.li/SBUAssistCtr
A program of Stony Brook University Hospital, the center serves as a resource for up-to-date information about Alzheimer's disease. It also provides weekly support groups for families, held concurrently with a separate group for people with Alzheimer's.

Alzheimer's Association: 800-272-3900; alz.org
Chicago-based organization offers a wide range of information for caregivers on its website, including a "Caregiver Stress Test" and a locator of support groups.

OTHER SELF-HELP AND SUPPORT GROUPS

Many other support groups meet regularly throughout Nassau and Suffolk counties, sponsored by adult day care programs, religious institutions, hospitals, libraries, senior centers, various "Y's," and community social service agencies. For a comprehensive listing of such groups, contact the Nassau County Office of Aging at 516-227-8900; or Suffolk County Office for the Aging, 631-853-8200 in Hauppauge or 631-852-1420 in Riverhead.