Like many elderly parents, my mother wanted to stay in her home until she died, and my brothers and I promised that we would try to honor her wishes. She was our Mom—an incredible mother who had made so many sacrifices and poured so much love into our family that there was never any question that we would try to do everything possible to keep her home. I’m sure that’s true for many families.

As it turned out, we were able to meet Mom’s medical needs through home care agencies, doctors, nurses, and other professionals who visited Mom at home—and were covered by Medicare and Medicaid programs. But it was not easy. Especially when we were caring for Mom during her late Alzheimer’s stage.

If you’re considering long-term care options at home, take another look at the steps in Chapter III, (“Hiring Home Care Aides”).  My family began by paying privately for a part-time custodial home care aide, largely to support one of my brothers, who was living with Mom and lovingly took on many responsibilities—but also needed daily respite periods. As Mom’s health became frailer, we realized that Mom would need much more custodial care and we had started doing some legal and financial planning several years earlier. Working with an elder law attorney, we reorganized Mom’s assets and finances, enabling her to qualify for New York State Community Medicaid, which initially covered the cost of custodial or companion care from licensed home health care agency aide for several hours, five days a week.

Over time, Mom’s physical and cognitive capabilities continued to diminish. She was no longer able to speak or walk well; she needed a walker to get around inside and a wheelchair to be taken outside. We realized that we needed a well-crafted plan that integrated a team of family members, professional caregivers, and an array of health care providers. And we knew that even with our best efforts, if Mom’s health needs increased to a level that required daily skilled nursing care—not covered by Community Medicaid—we might have no choice but to move her to an adult care facility.

In my Mom’s case, this meant scaling up to a 24/7 live-in schedule of home health aides, a request long-term care case managers carefully scrutinize. Eventually, with the help of her Medicaid case supervisor at the county Social Services Department, Mom was able to qualify for 24-hour home care as a member of the state’s Medicaid Long Term Managed Care Plan.

Collaborating on a care plan with the home care agency, my brothers and I adjusted our mother’s eating regimen, making sure she was fed more slowly; and was always upright during meals; pureeing much of her food to avoid choking; and keeping her hydrated with frequent snacks of sugar-free ice pops as she faced increasing difficulty swallowing liquids.

Mom’s aides were diligent in taking care of her personal hygiene needs, grooming and dressing her, feeding her and moving her throughout the day as she became less ambulatory. That said, my brothers and I also had to remain regularly involved, giving Mom her daily medications; administering light exercises which we had been taught by her physical therapists; and taking her to doctor’s appointments and wound care treatments. Ultimately, family caregivers need to remain advocates for their loved ones, working in partnership with professional home aides and other health care professionals.

As noted in the previous section on “promoting social engagement”, maintaining social relationships is critical to everyone’s overall health, whatever your age. Health experts also emphasize that social engagement acts as a significant buffer against dementia as you get older.

Yet when people age at home for long periods of time—especially in the suburbs—the more likely they are to end up socially isolated. As we get older, we tend to lose our natural social networks. Children and friends move away; spouses and relatives pass away; and with decreased physical mobility, it’s harder to get to church, community events and other social activities.

Researchers have found that even before the coronavirus forced us into social distancing, we were experiencing an epidemic of loneliness across many age groups worldwide. Nearly 1 in 4 older adults fit the definition of socially isolated, without routine social contacts, and that can be harmful to both physical and mental health. Social isolation has been associated with a significantly increased risk of heart disease, cancer, stroke and dementia.

In my own family, my brothers and I grew up with a mother who was extraordinarily social and engaged in many activities at her church, in our schools and neighborhood, while also orchestrating myriad family events: creating a local classical concert association; teaching weekly china-painting classes; and tutoring students in Spanish (Mom was a native Cuban). But as Mom became less ambulatory and reluctant to drive at night, it became clear that we needed a family plan to help bring social engagement to her. For a time, we brought her to adult day programs several days a week, offered by local health-care facilities. (See next section for more information about adult day services.)  And we organized a schedule of daily and weekly activities that each of us could do with Mom on our regular visits.

As I pointed out earlier, there are lots of virtual opportunities to help your loved ones stay involved while they also age in place safely in their homes. There are video-chatting platforms like Zoom that can connect them with their family, join their friends in social activities, or participate in online courses, programs, museum and gallery tours. (See Social Engagement Resources)

For seniors who are particularly isolated, perhaps living alone, there are additional resources that can help provide regular social connections. AARP, for instance, offers these programs nationwide:

There are also “telephone reassurance” and check-in programs offered by local senior centers and agencies (see Local Social Service Organizations), such as North Hempstead Town’s Project Independence.

Similar programs are offered by nonprofit organizations, including

the Retired and Senior Volunteer Program (RSVP) in Suffolk County
(www.rsvpsuffolk.org/ 631-979-9490 [Smithtown]; 631-267-8371 [Amagansett];

the Mid-Island JCC (www.miyjcc.org; 516-822-3535;

Family and Children’s Association (www.fcali.org; 516-746-0350);

and Catholic Charities of Long Island (www.catholiccharities.cc; 516-733-7000).

Adult day programs—perhaps the least known service in the elder care continuum—are designed to provide specialized care and socialization for frail older persons, including those with dementia, while also giving families daytime respite from their caregiving responsibilities.

These programs are offered in structured settings, often through town and city government agencies or private assisted living, nursing and other health care facilities.  Programs include a variety of health, social and related support services offered during any part of the day, but for less than 24 hours. They are usually described as either social or medical model programs:

Eligibility, fees and services vary. Most social model programs accept a variety of payment sources, including private-paying clients, Community Medicaid, and some long-term care insurance policies. Medical model programs may accept Medicare and Medicaid payments.

 On Long Island, the cost of social day care ranges from $65 to $100 per day, and this cost includes at least one meal and therapeutic programming. According to the Genworth 2021 Cost of Care Survey, the median annual cost of adult day services in the New York Metro area is $23,400, based on five days a week. But many programs offer a sliding fee scale based on income because they are subsidized by government funds.  

Some programs only accept participants who are ambulatory. In general, participants can be in wheelchairs, as long as they can bear weight and be transferred with the assistance of one person on a temporary basis. Some programs also may require participants to manage personal toileting needs. Therapeutic recreation and social activities, as well as cultural and educational programs, are adapted to the abilities of each participant. (Programs may accept participants accompanied by home health aides.) Other services may include transportation, information and referral for social services, personal and family counseling, and nutritional counseling.

Family caregivers should visit an adult day care facility to get the best information about its physical setting, staff, level of individual care and other service components. Based on an interview and assessment, the facility staff and the participant’s physician develop an individualized plan of care.

“Adult day programs help families manage their loved one's care at home and keep people in the community for as long as possible,” says Lori Maldavir, former Director of Day Haven and Program Development at Community Program Centers of Long Island. “Most of all, they enhance quality of life for frail adults and people with dementia by giving them a sense of purpose, eliminating social isolation and helping them maintain their independence.” 

Overall, my family felt that Mom’s experiences at two adult day programs gave her a welcoming venue that enabled her to be more socially engaged and active. It did, however, require us to arrange transportation services to and from the facilities, and after about two years, the stress of transporting her each time seemed too much. So, despite its many benefits, we decided to discontinue Mom’s participation in adult day programs—while remaining grateful that she had the opportunity to do so.

As your loved ones get frailer, staying in their own home—even with family caregiver support and professional aides—may not be the best fit for them. But how do you know when it’s the right time to move to some type of adult care community? While there’s no perfect answer, Julie Wexler of The Bristal offers three common scenarios for families and their caregivers to consider:

First, situations where your loved ones are still fairly independent, but tasks are getting more difficult at home, and they no longer want the burden of maintaining their house—which is getting older, just as they are! Perhaps their neighborhood has changed, they’re no longer able to drive, their friends have moved away, or their spouse has passed away. In this situation, moving to an assisted living community could offer the opportunity for a better lifestyle around other people, with more structure, safety, social and recreational activities.

Second, situations where your loved ones begin to experience daily difficulty because of physical frailties. Maybe they’re a little unsteady and need some assistance with traditional Activities of Daily Living (ADLs), like climbing stairs or getting in and out of the shower. There also may be more serious warning signs that your loved ones are not safe at home, such as bruises from falling or indications they are not taking their medications consistently. Perhaps they appear to be suffering from social isolation and are not eating well (eating is often part of social behavior).

While the needed care could be provided by a companion or health aide, their home environment may not be the best fit for home care for various reasons. Maybe they don’t have the assistive equipment needed to ensure their safety. Or maybe there’s no backup assistance in case the primary aide is not available. Whatever the concerns, your family may feel greater comfort knowing your loved one was in a 24/7 environment with professional staff support and assistance.

Third, your loved ones may start to show signs of cognitive decline, particularly as they enter their later years. (Half of all people age 85 and older have some degree of cognitive decline.) You may see them not caring about personal hygiene, wearing the same clothes worn for several days in a row or dressing inappropriately for the weather. Or perhaps the refrigerator is empty or filled with spoiled food. They clearly need a higher level of supervision, safety and support for their daily personal needs—and realistically, this level of care could lead to burnout, if left solely to the responsibility of caregivers in the home.

Under these circumstances, moving to an assisted living community is not just a default choice; it may be the best choice, offering significant benefits over living at home.

An assisted living environment (in some cases, with a memory care unit) may not only provide a higher level of health care and safety, but it may also ensure a stronger social support system for your loved ones. “It’s all about staying engaged,” says Wexler. “It’s not about the size of the living space; it’s about all the other things that support you as you age.”

A long-time friend of mine, Robin Marks, a former executive at Amber Court Assisted Living and retired Executive Director of the Alzheimer’s Disease Resource Center, put it this way: “Home care can be successful if your loved ones can still connect with the outside world,” she says. “If not, you need to bring the world to them—and that’s the time for assisted living.”

Even after you’ve determined that the best course for your parents is assisted living, it’s important to continue thinking ahead as much as possible, because these transitions could take several months. It’s as much of an adjustment for family caregivers as it is for their loved ones, and making decisions has become even more challenging amid continuing public health concerns. You should re-examine various aspects of such a move, reviewing the family’s earlier financial, tax, legal and estate planning. Among the steps to consider:

You may need to sell your parents’ home. That means preparing the house for sale, cleaning out its contents, hiring a real estate agent, and completing the sales transaction.

Assisted living is a general term that describes a residence for seniors that provides assistance with “Activities of Daily Living,” or ADLs, as needed.  (See more discussion of ADLs in the previous chapter on home care). These activities can include bathing, dressing, grooming, taking medications and making doctors’ appointments. Meals, housekeeping and laundry services are also provided.

The goal of assisted living is to provide each resident with care in a comfortable, secure residential setting, while maintaining their independence and privacy to the extent possible. In general, supportive housing-and-services models offer social and personal care services, but they do not include the skilled medical care provided in nursing homes.

In New York State, all models of assisted living must be licensed by the department of health as an Adult Care Facility. Depending on the type of license they have, adult care facilities are categorized as Adult Homes or Enriched Housing Programs. Assisted Living Residences—the type of adult care community most people on Long Island are familiar with—must be licensed within one of these two categories.

Assisted living residences are required to provide housing, daily food service, 24-hour, on-site monitoring, case management services, an individualized service plan for each resident and personal care services in a home-like setting. They may offer each resident their own room, a small apartment or shared space with a roommate. Residents share common areas, such as a dining room or living room. These communities frequently offer services like transportation, planned activities, exercise and wellness programs,  

Some facilities may be licensed to provide a higher level of care: 

Nassau

Amber Court of Westbury

Maple Point Senior Care (Rockville Centre)

Newco ALP (Hempstead)

Hempstead ALP (Long Beach)

The Bristal at Lynbrook

Suffolk

Sachem Adult Home (Holbrook)

South Bay Adult Home (Center Moriches)

Amber Court at Suffolk County (Smithtown)

Medford Hamlet (Medford)

Woodhaven A.H. (Port Jefferson Station)

In particular, “senior living advisors” are professionals who specialize in helping families navigate the process of choosing a long-term care community for their loved ones, including independent and assisted living, memory care, home care and skilled nursing.
These advisors undergo extensive training and spend hours inspecting communities, meeting staff and reviewing state reports. They meet with families to assess their needs and budget; help them establish a transition plan; accompany them on visits to facilities; assist in negotiations; and follow up with families after a placement is made. There is no cost to families; advisors get paid a commission by the senior living community that their loved one moves into.

“Making the right care decision for parents and other senior loved ones can be a daunting task filled with stress, tension, and pressure,” says Adam Flattau, owner of the Senior Care Authority-Long Island and a Certified Senior Advisor (CSA). “Our mission is to help families make informed, courageous decisions to help seniors safely thrive with dignity.”

If your loved one is experiencing chronic, long-term medical problems, it may not be possible for them to receive the full-time care they need at home or in an assisted living community. In such instances, a nursing home may be the best place for such care.

Nursing homes, or skilled nursing facilities, are residences licensed by the New York State Department of Health that can offer subacute care—a level of skilled medical care “between hospital and home”—provided under the supervision of trained individuals such as registered nurses. Skilled nursing services may include intravenous injections, tube feeding, physical therapy, changing sterile dressings on a wound, and monitoring vital signs and medical equipment. Although all nursing homes must provide certain basic services, some provide specialized care, like services for people with neurobehavioral disorders or for those who are ventilator-dependent.

Nursing homes offer a 24/7 protective environment for residents who do not need to be in a hospital setting, but who can no longer safely live on their own. These facilities provide a room, meals, help with activities of daily living, recreation and general nursing care to people who are unable to take care of their daily living needs. While most nursing homes are nonprofit or for-profit businesses, they may be owned by state or local governments, individuals, religious or charitable organizations. They are Medicare- and Medicaid-eligible, and to be certified by Medicare, skilled nursing facilities must meet strict criteria and are subject to periodic inspections.

Choosing a nursing home for a loved one, as with other adult facilities, is often an emotional process—perhaps even more so today. Nursing homes were affected by high numbers of COVID infections and deaths, leading to a shutdown for months and intense scrutiny of staffing and policies. A new state law now requires nursing homes to meet minimum standards for staffing and patient care.

Before someone can be admitted to a nursing home, the State Health Department requires them to undergo an assessment to determine their physical, psychological and social needs. The assessment forms are called the PRI (Patient Review Instrument) and the Screen, which must be completed by a certified public health nurse and are valid for 90 days. Forms can be obtained at a hospital, from a nursing home, or from the county Department of Social Services.

If your loved one can enter a nursing home directly from a hospital, the hospital’s social worker and discharge planner complete the PRI and Screen and make the necessary transfer arrangements, working with area nursing homes. If someone can be admitted to a nursing home from their own home, the PRI and Screen can be obtained from the local Visiting Nurse Service or a certified home health care agency whose staff is qualified to make these evaluations. There are also professional individuals and agencies who specialize in long-term care placement and are qualified to help families handle this process. (Ask in advance about their fees.)

New York State regulations require that a hospitalized patient on Medicaid who no longer needs inpatient hospital care be placed in the first available bed within 50 miles of the patient’s home. A Patient Care Plan is formulated by a registered nurse, in conjunction with a physician, for the optimal, on-going care and rehabilitation for each nursing home resident.

Before it’s time for your loved one to be admitted to a nursing home, thoroughly explore what options are available and research each facility, following similar steps outlined in the assisted living search process:

For caregivers, dealing with Alzheimer’s disease presents daunting challenges every day. Not only must caregivers manage the needs of frail adults suffering from cognitive decline, but they must deal with their own emotional struggles as they watch the disease slowly steal the identity of their loved ones.

Alzheimer’s affects more than 50,000 people on Long Island—and more than 6 million people nationwide—two-thirds of them women. And since many families choose to keep loved ones with dementia at home, caregivers often find themselves feeling fatigued, isolated and overwhelmed. For several years, my own family experienced the challenges of such caregiving, as my brothers and I, along with a live-in aide, took care of our mom through each progressive stage of Alzheimer’s.

Nevertheless, we should take heart that there are many great resources that can help Alzheimer’s families, including counseling services, support groups, educational workshops, training programs, planning guides and professionals, websites and books. As Judy Cornish, author of The Dementia Handbook and Dementia with Dignity, notes, Alzheimer’s caregivers also may discover some unexpected gifts amid their daily tasks, appreciating the ability to be fully present with their loved ones, enjoying life’s beauty together while ensuring their sense of safety, security and dignity.

On Long Island, we have several nonprofit organizations that offer extraordinary daily support and resources. Many of them continued to provide services online throughout the coronavirus pandemic, and I’ve always been heartened by their collaborative approach, working together to help families find the right resources for their needs. All these groups provide broad support for families, education and care consultation, but each also has a few special services. Some examples:

The Alzheimer’s Association Long Island Chapter has a free 24/7 Helpline that offers specialists and Master’s-level clinicians who provide confidential telephone support and information to people living with dementia and caregivers. “You can literally call on New Year’s Eve at the stroke of midnight and get support,” says Long Island Chapter Executive Director Douglas Davidson. The association offers caregiver support groups, a range of education programs and care consultation services. “Care planning has proven effective in increasing mental health and enabling caregivers to take action,” adds Davidson. And since the Alzheimer’s Association is a nationwide organization, its services are available around the country.

The Alzheimer's Disease Resource Center (ADRC) is a grassroots community-based nonprofit organization serving families on Long Island who are impacted by Alzheimer's and other forms of cognitive decline. ADRC provides care consultations, information and referrals, education, support groups, and therapy programs for caregivers and their loved ones. In addition, ADRC provides educational training to professional healthcare workers, graduate students, and other organizations throughout Long Island. “The families we serve often reach out because they are overwhelmed and unsure of what is the next step,” says Executive Director Lauren Vlachos. “ADRC provides help and hope in the form of referrals, references and support. Our support groups are tailored to the caregiver and our life-enrichment programs are for both the caregiver and the individual with the disease.”

The Long Island Alzheimer’s and Dementia Center, (LIAD). Formerly the Long Island Alzheimer’s Foundation, the center was rebranded to better convey its mission, offering hands-on services that improve the quality of life for diagnosed individuals and caregivers. LIAD is especially noted for its top adult day care programs for specific stages of dementia offered Monday to Saturday, its transportation services, and its in-home respite program for caregivers, educational training, and one-on-one counseling. “The most important part of our mission,” says Tori Cohen, LIAD’s Executive Director, “is to help to only the person diagnosed, but the caregiver, guiding them through every step of the journey.”

For more information about these organizations, see "Alzheimer's Caregivers Support".

Understanding Dementia

Many discussions about the loss of cognitive skills focus on dementia, not just Alzheimer’s. So what’s the difference? 

Dementia is an umbrella term for a category of diseases and conditions (the medical term is “neuro-cognitive disorder”) marked by cognitive decline, notably memory loss, as well as difficulty with language, sequence, problem-solving, judgment and organizational skills. Alzheimer’s causes large numbers of brain cells to die and generally begins near the hippocampus, the brain’s memory center, spreading to other areas of the brain.

Other types of dementia include vascular dementia (caused by small strokes or changes in blood supply to the brain), Lewy body dementia and frontotemporal dementia. Other possible causes of dementia include emotional problems like depression; bad reactions to sleeping pills or anti-anxiety medications; and sleep disorders such as sleep apnea. But Alzheimer’s is the most common cause of dementia, accounting for roughly 60 percent of all cases.

Researchers have identified several known risks for Alzheimer’s, including age, genetics, head injury, and cardiovascular factors. After age 65, the risk of Alzheimer’s doubles every five years, and after age 85, the risk reaches nearly 50 percent. Age is the biggest risk factor for dementia, and yet, the disease is not a part of normal aging. If it were, we’d all get dementia—and that’s not the case.

While billions of dollars are being spent every year on Alzheimer’s research, there is no known cure yet. Recently, the U.S. Food and Drug Administration approved a new drug, aducanumab, produced by Biogen, as a treatment for Alzheimer’s. Although not a cure, aducanumab is the first FDA-approved therapy in almost 20 years that may potentially delay cognitive decline from the disease—compared to current medications and therapies may only help treat the symptoms of Alzheimer’s. Even so, the approval of aducanumab was conditional, requiring Biogen to conduct further studies to prove its effectiveness.

Dementia tends to develop slowly, so if your loved one’s mental state changes relatively suddenly, that’s not the usual picture of a degenerative disease. Sudden onset may be a stroke or delirium, due to something like a urinary tract infection. The average span of the disease is seven years, but it can go on as long as 20 years. It’s important to recognize the early signs of the disease, which often goes undiagnosed until it reaches an advanced stage. Perhaps your loved one is experiencing what’s known as Mild Cognitive Impairment, or MCI. The Alzheimer’s Association has created a  helpful list, “10 Warning Signs of Alzheimer’s Disease,” comparing potential symptoms to typical age-related changes vs. signs of dementia.

Some examples of :

While there are several early warning signs of dementia, diagnosing Alzheimer’s is not a job for amateurs. If you’re worried you should consult a specialist such as a geriatrician or neurologist, who can diagnose the disease with a high degree of certainty.

Doctors will likely ask patients and family members a series of questions, such as, “How well can the person do everyday tasks like driving and shopping for food?” They may ask about your family’s health and review your loved one’s medicines; also, they may provide a series of tests to check memory, problem solving, counting and language skills. Early neuro-psychological testing can help identify where problems are located within the brain, and this can be especially helpful in getting an accurate diagnosis. 

It also may be a good idea for family caregivers to accompany their loved ones on doctor visits.  People with possible cognitive impairment may not realize they are providing misinformation to the doctor; their sense of reality can be quite different from what other family members see.

Even when they experience potential warning signs of Alzheimer’s, people are often hesitant to visit a doctor for cognitive evaluations. Unfortunately, there are still many stigmas around the disease: feelings of shame or embarrassment, fears over loss of independence, financial suffering and concern over how they will be treated by others.

Nevertheless, early detection of the disease is critical for several reasons: