How to Choose Assisted Living for Someone with Disabilities

Here’s a startling statistic: by 2020, the number of seniors is projected to outnumber children worldwide. By 2050, one-fifth of the total U.S. population will be 65+. Those 85 or older will be the fastest-growing segment over the next few decades.

For many elders, life on a day-to-day basis is challenging. More than half of the “oldest old” (those 85+) are dealing with at least four chronic diseases, and 25 percent have more than six.

As the senior wave grays the globe, there is a corresponding surge in the number of elderly people who need assistance with their ADLs (Activities of Daily Living). But how do you know whether someone is “disabled” — and if their plan to age in place is no longer viable?

Defining “Disability”

Disability changes the landscape of senior living options. Below are the primary parameters researchers with the U.S. Department of Health & Human Services use to define “disability” in the elderly. Consider these points a guide to help determine if your loved one may be disabled, or becoming disabled:

  1. Ability to manage 5 core ADLs: bathing, dressing, using the toilet, transferring from bed to chair, and feeding oneself.
  2. Ability to manage daily life tasks, known as Instrumental Activities of Daily Living, or IADLs. IADLs include:
    1. preparing meals
    2. taking medications properly
    3. grocery shopping
    4. housework
    5. managing money.

Many elderly individuals do not require assistance in core ADLs, but cannot perform these IADLs without occasional or ongoing help.

  1. Cognitive functioning. Some seniors, including those with Alzheimer’s disease, may be physically capable of performing ADL and/or IADL activities, but should not be allowed to perform them independently because of their cognitive impairments, which impede their ability to handle these tasks safely and accurately. In other words: if a senior with dementia is cooking her own meals, she may leave the stove on and accidentally set the house on fire.
  2. Impaired in an ADL, but able to perform the task with the aid of an assistive device, e.g., getting to the bathroom with the aid of a walker, or climbing into the bathtub with the aid of a grab bar.

Measuring disability is therefore not a straightforward matter. Some elders require the active assistance of another person to perform an activity; they absolutely can’t do it on their own. Others may be able to perform an activity with difficulty, but just need someone nearby in case they require assistance.

The most common approach, per the Department of Health & Human Services, is to define someone as disabled in an ADL if he or she requires the help of another person to perform the activity. Thus, elders who can manage on their own with assistive devices are generally not considered to be disabled.

How to Select the Right Assisted Living Facility

An Assisted Living community may be the answer for a senior with disabilities, because it can provide the degree of help needed, allowing the resident to maintain as much independence as possible. A residential care home might be another good option, especially if the home specializes in serving seniors with disabilities and is equipped to provide the level of care your loved one needs. The smaller, homey atmosphere can be very soothing for someone with dementia or other cognitive impairment.

When considering an assisted living facility or residential care home for an elder with disabilities, be sure to address the following ten questions:

  • Is the facility clean and odor-free?
  • Are the residents well groomed?
  • Do residents seem happy?
  • Are caregivers and employees engaged with the residents? Do they seem to like their work?
  • Are caregivers trained to meet the special needs of people with the disabilities my loved one has?
  • Who administers medication and attends to urgent medical needs?
  • What types of training do caregivers and other employees receive?
  • Ask to see a resident’s room or apartment. Is the space clean, and in good condition?
  • Are the common areas — kitchen, laundry, bathrooms, guest rooms — clean and well maintained?
  • Are family members and residents encouraged to stay connected?

Financial Help for Elders and the Disabled

A non-profit organization known as Elderly or Disabled Living (EDL) is a housing help service that assists seniors or people who are disabled (an applicant doesn’t need to be both) with paying a portion of their bills. Because it is a private charity, there are no waitlists or special requirements. is open to all U.S. citizens on an equal basis. An applicant may only receive financial assistance once per year, and is welcome to reapply at any time if they are not selected.


Dementia, Alzheimer’s, Memory Loss… What’s the Difference?

People tend to use “Alzheimer’s” as a catchall term for memory loss in older adults, but Alzheimer’s disease (AD), first identified by neuropathologist Aloysius Alzheimer in 1901, is only one form of dementia.

Dementia is the umbrella category of brain diseases that cause a gradual decline in the ability to think, remember, and function day-to-day. It refers to a cluster of symptoms such as short-term memory loss, language deficits, poor judgment, and changes in behavior. Alzheimer’s disease is the most common form of dementia, comprising 50 to 70% of all dementia diagnoses.

The Difficulty with Diagnosis

Part of the confusion around dementia and Alzheimer’s arises from the challenge in diagnosing Alzheimer’s disease with complete accuracy while someone is alive. The “markers” for AD — sticky plaques that accumulate in the brain from abnormally folded proteins, causing inflammation and cellular damage — can only be positively identified on autopsy. Thus, doctors generally make an Alzheimer’s diagnosis by testing for and eliminating other possibilities.

After AD, the second most common cause of dementia results from high blood pressure, high cholesterol and diabetes. All of these conditions block the arteries and impede blood flow to the brain, creating what is known as vascular dementia. If blood can’t reach the brain easily, parts of the brain die. This is called an infarct, and is similar to what happens in a heart attack, or myocardial infarction. When brain tissue dies, the person begins to exhibit signs of cognitive impairment.

In some cases, what looks like dementia may actually be a vitamin or mineral deficiency, since absorption of nutrients declines with age. Because loss and loneliness tend to increase with age as well, depression can be a major factor in dementia. One study found the effect of loneliness is equivalent to smoking fifteen cigarettes a day! Loneliness, and the lack of mental stimulation and emotional connection, increases the risk of heart disease and other physical and mental health problems. It’s a downward spiral in which dementia is an effect, rather than cause.

Finally, Parkinson’s disease, a long-term degenerative disorder of the central nervous system, can cause dementia symptoms. While dementia only becomes widespread in advanced stages of Parkinson’s, depression and anxiety are more common complications, and can also escalate mental decline.

Reducing the Risk

Although Alzheimer’s disease is not currently reversible or curable, its progression can be slowed — and other forms of dementia, such as vitamin deficiency or depression, can be treated, halted, and usually reversed.

Some of the best ways to reduce an older adult’s risk of developing non-Alzheimer’s dementia are surprisingly simple, yet many people ignore them. To brighten your brain, or that of a senior loved one:

  • Exercise regularly
  • Quit smoking
  • Learn something new; challenge your mind
  • Get enough sleep
  • Eat a healthy diet
  • Stay socially active
  • Get a health check-up, especially for blood pressure and cholesterol
  • Protect your head. Over half of those 80 and older fall every year. If you’re unsteady on your feet, use a walking stick, and make sure your home has bathroom handrails and non-skid floors throughout.

When to Place a Loved One in Memory Care

Though most people want to age in place (remain in their own home as they grow older), as dementia progresses this may no longer be feasible, even with a caregiver. These seven questions can help you evaluate whether it’s time for Memory Care:

  • Inattention: Do they forget to turn off the stove?
  • ADL: How well does he/she handle activities of daily living (eating, dressing, bathing)?
  • Personality: Is your loved one suspicious of others, fearful of taking medications, or of eating certain foods?
  • Medication: Is your loved one taking medications on schedule, following correct dosages, and willing to use an organizer/reminder device if necessary?
  • Short-term memory: Has your loved one gotten lost on a walk, or while running errands? Can he/she remember personal information such as address, phone number, contacts, that enable them to return home?
  • Do you have additional support to care for your loved one at home?
  • Is the amount of home care assistance needed likely to become so great that it is no longer affordable for your family?

Options Beyond Memory Care Facilities

Dementia care can be expensive, because Medicare and Medicaid do not pay for “custodial care”, meaning day-to-day care that does not require skilled nursing.

However, there are options beyond memory care facilities. One is adult day care. Adult day care programs provide care during the day for individuals who are unable to live at home alone, but don’t need full-time nursing care. If you or another person is available to care for your loved one during evenings and weekends, adult day care may be an excellent resource to delay or avoid memory care placement.

At adult day care programs, trained individuals care for those with dementia in a setting that provides interaction and stimulation, which help keep people’s minds sharper, longer.

Another possibility is a residential care home, also known as RCFE (residential care facility for the elderly), adult day home, board-and-care home, or personal care home. These small group settings provide basic services (usually meals and light assistance) at a much lower cost than typical assisted living communities or nursing homes. Medicaid may also pay some of the cost for residents who meet eligibility requirements.


Dealing with dementia can be very difficult for everyone involved. The more information you have, the better equipped you’ll be to support your loved one in making the best choices for the road ahead.

Interview with Julia Soto Lebentritt

Julia Soto Lebentritt is a ‘lullabologist’ and the owner of Spontaneous Care Communications. She has spent her career recording, presenting and producing lullabies from the many cultures that make up our American society is commended for clarification of the lullaby as a genre and exploration of multicultural settings.  As an elder care case manager, bereavement facilitator, therapeutic activities director and a family member, she is a caregiver using lullaby traditions. She has certification in Alzheimer’s disease management and a master’s in fine arts in creative writing.


Interviewer:  Julia, it’s nice to talk to you today. We’ll talk about your book for caregivers, It’s called “As Long as You Sing, I’ll Dance: The Bond, not the Burden, the Blessing of Reciprocal Caregiving.” You draw on both professional and personal experience to write it. Can you give me a little background on that experience?

Julia Soto:  OK. The book is strongly motivated by my mother’s dementia that was a really traumatic experience for me and my family. I’ve always been involved with care giving in many different ways. I’m called a professional caregiver, meaning that I’ve worked in caregiving for the last 15 years or more, especially as an activities director at a CCRC and a case manager for the aging in a field position.

I was out in the field in northern Vermont. I’m also working now in bereavement at a community hospice. I have…I’ve worked in other positions that have been direct care, like nurse companion, and various ways that have been useful [inaudible 01:33] , but the major other part of this unique piece of my work is that it’s related to parenting, as well.

Interviewer:  You talk about reciprocal care giving. Is this a term that you’ve coined, or you’ve just developed? Can you tell me a little bit about what it means?

Julia:  I have…It’s my own method that I experienced. In the ’80s I had the opportunity through grants from several national, state, and local programs to develop a rather large project called, “The New York City Lullabies Project.” And in that I went out and recorded on‑site the actual soothing and relaxing of children. And I saw there that the partner, the adult partner, could not soothe or relax the child without soothing and relaxing themselves. So I saw the reciprocal care that is available in good attached…as good attachments and bonding in the parent child/relationship, so that means it’s a mutual thing. That there’s no way that you can quiet down another without quieting yourself first and soothing yourself.

So out of that came my experience of I went into healthcare facilities and worked. I saw that there was a stressed care going on. The caregivers were stressed. It was a stressful place, and that if they could come for heart‑to‑heart care.

And even on your website I noticed today that there’s a mention of a quote. A happy senior says, “What we noticed immediately was that the employees treated the residents as friends and in some cases family.” And so what comes naturally really is, for the human being, caring and kindness, but if not nurtured and maybe also helped along by being encouraged that we should be interested in present in the moment, that caregiving is not reciprocal. In other words you’re not caring for yourself at the same time as you are caring for another when you are not giving reciprocal care.

Interviewer:  OK. So tell me then about the lullabies, and how they have a place in care giving through reciprocal care giving.

Julia:  Yes. First of all, I want to make it clear that I’m not talking about the recorded lullaby with music. I am talking about music. I’m talking more about the ways that the kinds of communications that the lullabies encourage. So in my book I’ve actually done an interesting piece of work in breaking out what lullaby communications are like, so the book includes activities that relate to humming, rocking, swaying, singing names, traditions of gathering. That’s like storytelling, other ways that we can gather through traditions that we create, tapping, echoing gentle touch. So I’m talking about the communications that the lullabies encourage, as well as the singing of certain songs that are appropriate and are meaningful to the people we’re working with.

Interviewer:  You say in your book that people with Alzheimer’s or dementia remember feelings associated with places and people even if they don’t directly remember the place or the person. So would you say that your therapies are ways to elicit memories of those feelings? Or to create a safe and familiar platform?

Julia:  Yes, absolutely. One of the major points in the book is making is that it’s a myth that there’s nothing there at all. Memories are sensual, related to sensual experiences, and the problem is is that we have to accept that we can no longer communicate just with language as if it were in an office somewhere or that the caregiving can be tremendously creative like our parents were creative in caregiving, that we can actually find a way that brings us back to our more original language, which there were many options when we were growing up as children to use sound, touch, movement, and all of these will help bring back memories and physical activity as well. And that is profound. There have been many examples lately, especially on the Internet, the viral example of that elder that was having no response at all in a wheelchair, and then suddenly they played some jazz from his youth on some iPod, and he became totally electric and shared memories of seeing Cab Calloway, or someone like that. It’s amazing.

Interviewer:  It is. That’s really neat. Do you think just because we begin to rely so much on verbal communication that we forget these things?

Julia:  Definitely, yes, we very…and that’s what’s stressing our society or culture today. We were not really built for the speed that we’re moving at and the daily census that has to be kept at such a large number and the requirements of documentation. We were not really built for that, and we’re involved as caregivers and as human communication. Also I want to point out, Carrie, that the history here is important to look at because dementia was originally treated under psychiatric nursing, and geriatric nursing is a fairly new and emerging field. So, for instance, my Aunt Sadie ended up in a mental institution because she was senile, they said. And that wasn’t that long ago, that that was how we took care of people who begin to exhibit dementia, and couldn’t be left alone, you know?

Interviewer:  So your book is really useful for caregivers across the spectrum, whether you’re caregiving in your home or for people working in a facility.

Julia:  Yes, thank you. I just want to point out that I had an experience in a wonderful CCRC in Vermont, northern Vermont. Wake Robin is the name of it, and there we had a group of independent, and some assisted living people, who joined the St. Bernard’s. And they become caregivers of these skilled living facility residents. And they were companions using the kinds of activities that I’m proposing in my book. I recently was visiting and doing a program at a facility in Albany, at the Region House, and one of the elders went off happily with the book, because she said, “We can do this. We can do this. We can help other people. I know this song.” So I think the caregiver, the people who are in your facilities can caregive.

Interviewer:  Definitely.

Julie:  Yeah.

Interviewer:  Great. OK. Again, the book is called “As Long as You Sing, I’ll Dance: The Bonds, Not the Burden, The Blessing of Reciprocal Caregiving.” I can find that on Is that right?

Julie:  Yes, that’s true.

Interviewer:  OK. Thank you so much for your time today. I really appreciate talking to you.

Julie:  OK. Thank you Carrie, and let me know what
Transcription by CastingWords