Caring for a Loved One With Dementia

The search for support, day care and social engagement for a mentally impaired husband.

By Susan Shafer

 

For the past two years, I have been looking after Ben, my 86-year-old husband, who was diagnosed by a neurologist with vascular dementia. His path has been challenging, but I’ve found many resources in New York that have helped him—or rather, us—in our journey, and I’ve listed them below. Much of the support that Ben receives comes from healthcare professionals: neurologists, physical therapists, occupational therapists, social workers, a speech cognition expert, a case worker and the organizations for which they work. It’s clear to me that there is a wealth of support available in New York for patients with memory loss and for their families.

First, what is dementia? According to the AARP, dementia is an umbrella term for “a nonreversible decline in mental function.” It is a condition that includes “several disorders that cause chronic memory loss, personality changes or impaired reasoning.” Of the many types of dementia, Alzheimer’s is the one we hear about most often. There are no cures at this time, but there are strategies and medications aimed at slowing the progression of the disease.

So prevalent is dementia that the World Health Organization states there are 47 million people with the condition, the number is expected to triple by the year 2050. A 2017 study done by the New York State Coordinating Council reports that in the United States, almost 66% of those with dementia are women.

The Diagnosis
Ben’s symptoms started slowly. At first his sense of left/right direction was off. Then he began repeating questions or comments and forgetting where he put his house keys.

For a while, I thought these were momentary incidents that were normal for a man of his age. After all, as a senior myself, I sometimes forget where I’ve left my keys. But after about six months, I realized that Ben wasn’t careless and his mistakes weren’t normal or his fault. Rather, he had a medical problem.

After a visit to a neurologist, the doctor sent Ben for an MRI of the brain and also a neuropsychological exam with a psychologist. By then, I knew, without needing a professional diagnosis, that Ben was suffering from dementia. I soon learned that there is no cure for the condition, but some medications might slow its progress. He was put on two of them, and later, a third. (Below, Susan and Ben at the time of their wedding, see Wedding Bells at 70.)

Connection to Hearing Loss?
In addition to his memory difficulty, I was concerned about my husband’s hearing problem. Was there a relationship between his hearing deficiency and memory loss?

In fact, there is. Some experts reason that a person who is hard of hearing is not getting the necessary stimuli to his brain. Others contend that the effort to hear others robs the brain of its cognitive function. In one study of the relationship between hearing loss and dementia, the patients with untreated hearing loss had the most decline in thinking ability. Though some experts disagree with these theories, they seemed reasonable to me. So, I added “Get Ben hearing aids” to my To Do list.

 

Help From Healthcare Professionals
Within a few weeks of his diagnosis, Ben began to receive assistance from the Visiting Nurse Service, and it was the physical-, occupational-, and cognitive-therapists that I found most supportive.

With home visits twice a week for several weeks, the physical therapists worked on his balance and gait. The occupational therapist stressed safety, suggesting that I install grab bars in the bathroom. She also recommended that I post my cell phone number on the coffee table, so my husband would know how to reach me if I was out, and write the day’s upcoming events on a white board, placing it in a prominent spot.

Those safeguards in place, the work of the cognitive therapists focused on memory. One of the therapists played card games with Ben, such as the matching game Concentration, and Gin Rummy, which involves some mental strategy. She also showed us iPad apps such as Peak, Unique, Dots, and Lumosity, designed to improve cognitive function.

The games and medications were all well and good, but the neurologist brought up another issue: “The drugs I prescribed might help, but more valuable would be socializing with others, engaging in conversation.” The doctor recommended that Ben join a book club or current events discussion group. Instead, I invited friends and relatives to visit us in our apartment, even for as little as an hour at a time.

Meanwhile, Ben began losing weight. Was loss of appetite common in dementia patients? Yes. Sometimes patients forget to eat or don’t realize they are hungry. So I left small bowls of fruit—drizzled with honey—on our coffee table for snacking during the day. In addition, I heard that using a red plate, rather than a white one, sometimes stimulates hunger in dementia patients. To my To Do list, I added, “Buy red dishes.”

Care for the Caregiver
How was I, his caretaker, faring through these events? Certainly, I was stressed. But I was aware of how important it is for the caregiver to be active and maintain social connections. So I continued meeting friends for lunch and attending Zumba and Nia classes a few times a week.

But I still felt guilty. Was I doing enough, I asked myself? Should I take Ben to other specialists or memory centers or day centers, even if he was reluctant to go? That worry has not gone away.

Arts Programs
With these questions in mind, I searched for specific arts programs in New York City that might interest him and was delighted to find a number of services for seniors in general, and some for individuals with memory issues. (In the Resources section below, please see programs offered by The Rubin Museum of Art, MOMA, Connect2Culture, Hudson Guild and DOROT.)

Overall, I have been impressed by the many knowledgeable and caring people and organizations in New York who are helping us along the way.
. . . . . . . . . . . .

A Sampling of Resources

AGENCIES

Alzheimer’s Association  (24/7 Help line: 800 272-3900) Their “Online Tools” includes lists of agencies and organizations that support patients with Alzheimer’s Disease and other dementias.

AARP Download their Prepare to Care: A Planning Guide for Families.

DOROT (171 West 85 St., NY 10024, 212 769-2850) This organization serves adults over age 60 on the Upper East- and West Sides of Manhattan, and in Westchester. Noteworthy programs: Information and Referral Services (assists seniors in getting doctors and other healthcare professionals), Lasting Impressions (guides seniors in the sharing of their memories), University Without Walls, Friendly Visiting, and Caregiver Support and Resources.

NY Connects (800-342-9871) New York State Office for the Aging helps older individuals link to long-term services and supports, such as home care, transportation, and meals.

HOSPITALS

Alzheimer’s Disease Services at Mount Sinai (One Gustave L. Levy Place, NY 10029, 212 241-8329) Diagnostic and evaluation services, support groups, and resources for patients and caregivers.

NYU Langone Health Alzheimer’s Disease & Related Dementias Family Support Program (145 East 32nd St., 646 754-2277) Evaluation, support, and treatment when dealing with memory loss.

Weill Cornell Medicine Alzheimer’s Disease & Memory Disorders Program (428 East 72 St., NY 10021  212 746-2441) The Neurology department has an Alzheimer’s Prevention Clinic which focuses on prevention strategies and education for the whole family.

CAREGIVERS, COMPANIONS, NURSES

Better Home Health Care Agency, Inc. (212 682-5900) Specializes in support for patients of all ages, including those in the hospital.

PSS Circle of Care (866 665-1713) Funded by both state and city government, this agency provides free support groups to NYC family members caring for an adult with Alzheimer’s or other dementias.

ComforCare NYC  (212 256-1933) Many of the caregivers are performing artists (dancers, actors) with experience in helping dementia and Alzheimer’s patients.

New York Foundation for Senior Citizens (11 Park Place, NY 10007, 212 962-7559) Provides services from home sharing to home attendants to respite care.

Selfhelp Community Services, Inc. (520 Eighth Ave., NY 10018, 212 971-7600) Promotes independent living for seniors through a wide range of home care and community-based services.

Synergy Home Care (575 Lexington Ave., NY 10022, 877 432-2692) Handles non-medical home care for seniors, including grooming, dressing, meal prep, and companionship.

Visiting Nurse Service (800 675-0391) Home health care workers, physical therapists, occupational therapists, and nurses.

ARTS PROGRAMS

Arts & Minds (646 755-3726, Carolyn Halpin-Healy, Director: 646 455-3774) They partner with museums to provide programs designed to improve the quality of life for people with Alzheimer’s and dementia through engaging in art, reducing isolation, and building a social network.

Caring Kind Connect2Culture (360 Lexington Ave., NY 10017, 24-hour helpline: 646 744-2900) Specializes in programs and services for Alzheimer’s and dementia patients through cultural experiences, from music to visual arts to dance.

Hudson Guild Adult Services (441 West 26 St., NY 10001, 212 760-9837) Opportunities for explorations in performing and visual arts for people of all ages.

Lincoln Center Moments (Stanley H. Kaplan Penthouse, 165 West 65th St., NY 10023, 212 875-5375) Free performance-based program in an intimate and supported setting, specially designed for individuals with dementia and their caregivers.

MET Escapes, Metropolitan Museum of Art (1000 Fifth Ave., NY 10028, 212 535-7710) Discussions about art, art-making, and other interactive and multi-sensory activities in galleries and classrooms.

Meet Me at MoMA, Museum of Modern Art (11 West 53rd St., 212 408-6347) Education programs for individuals with Alzheimer’s disease and their care partners.

MoMA Prime Time (11 West 53 St., NY 10019, 212 333-1265) Free courses, workshops, and films for New York seniors.

Music & Memory (17 West 17 St., NY 10011, 212 602-1331) Music engagement for those living in nursing homes, VAs, hospitals, adult day care centers, hospices, and for those receiving home care.

The Rubin Museum of Art (150 West 17 St., NY 10011, 212 620-5000) Art appreciation tours for dementia patients and their caregivers.

Sparking Wellness and Creativity through Art (Lenox Hill Neighborhood House, 331 E. 70th St., NY 10021 Leah Gable, 212 218-0481) Art Therapy program for seniors with mild to moderate memory impairments, including dementia.

OTHER SPECIAL PROGRAMS

Day Program
Lenox Hill Neighborhood House Older Adult Services (331 E. 70th St., NY 10021, 212 218-0447) For seniors who are unable to function independently due to mental impairment and are in need of support throughout the day. Program includes art therapy, pet therapy, music, poetry, yoga, lunch.

Day and Night Care for Memory-Impaired Seniors
The New Jewish Home (all locations—Manhattan, Bronx, and Westchester: 800 544-0304) Their new facility offers medical, social and therapeutic services.

Early Stage Alzheimer’s Service Program For Adults (SPA)
Stein Center (204 East 23rd St., NY 10010, sdaniels@steinseniorcenter.org, 646 395-8083) Creative writing, Tai Chi, art therapy, dance, live music, movies, and field trips.

LINC Program at Council Lifetime Learning
National Council of Jewish Women New York (241 West 72nd St., NY 10023, 212 687-5030) Provides people with memory impairment with a three-hour recreation/activities program.

“Beginnings” Program
Renewal Care (247 East 53rd St., NY 10022, 877 544-8161) A social gathering for older adults with early or mid-stage Alzheimer’s disease, dementia, and other neurocognitive disorders.

. . . . . . . . . . . .

Susan Shafer, a former teacher and children’s book editor, is now a playwright and freelance writer.

You may also enjoy these stories by Susan Shafer:

Library Books for Homebound Readers
On Stage: Women in History Come Alive
Wedding Bells at 70

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