Sep 28, 2011

Before Looking at Communities for a Person with Dementia Consider this

The absolute worst time to have to pick a live in community for someone you love is when you have no choice

By Carole B. Larkin
Alzheimer's Reading Room

In theory, a family should have time to look over the various types of residences and communities, ask questions, and gather information before making a decision. Then, make a well thought out decision based on needs, and all the evidence and information that has been gathered. This allows for a calm, well thought out decision.

In reality, the decision often gets made during and after a health crisis and under a state of duress.

The scenario, doctor says “S/he can’t live at home anymore. They’ll have to go to (insert here some type of senior housing like assisted living or a nursing home). The family is in shock. It never entered their minds that their loved one wouldn’t be going to their own home or back to their apartment, etc.

The family has days or weeks (if they are lucky) to find a place for their loved one to live. Or worse, their loved one has had a catastrophic reaction or two and their previous community tells them to leave, now!

What to do?

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My advice is, go look even if you’ve sworn on a stack of bibles that your loved one will always be at home until the end.

However, wouldn't it have been much better if you looked in a non-crisis mode, with a clear head, to determine what is out there? What do you lose? A little time. What will you gain? The peace of mind that you are making a well informed, educated decision, based on all the information available. Think about it.

Now to the heart of it. There are two models of senior housing.

One model is the medical model. That’s where medical needs take precedence over all other needs. Those are the nursing homes.

The other model is the social model. That is all types of housing where medical needs don’t take precedence, rather social needs take precedence. These include: independent living, assisted living, memory care assisted living, and personal care homes

People in the very early stages of dementia can live in independent living for a while, but eventually due to progression of the diseases, more services are needed than independent living can provide.

Chief among the services needed is assistance with medication, so that it is taken at the right time and in the correct dosage. Other needs can and do appear, such as reminders to bathe and dress appropriately to name a couple. In my experience as a Geriatric Care Manager I have found that older adults in independent living are there too long, i.e. needing additional services long before they move to the next higher level.

Regular assisted living is for reminders to take medicines, reminders to take baths, etc. Some residential care homes operate as regular assisted livings as well. Memory care assisted living is for still a higher level of care. Instead of a reminder to take a bath, the person has forgotten how to take a bath, and needs assistance with the mechanics of taking a complete bath (or shower).

Memory care assisted living exists in a number of forms. One form is a special unit within a larger community containing other levels of care, like regular assisted living and independent living and sometimes skilled nursing. It could be a standalone building on the campus or a floor of a high-rise building. Another form is a residential care home, designated as a Memory Care or Certified Dementia Care home. They have keypads on their front and back doors and are generally known as “secure” buildings in the senior living business.

How do you select the right type of home for your loved one? Assuming you have time to think about it.

It boils down to three basic things.

  • A realistic assessment of your loved ones capabilities and shortcomings at the moment and projected out to a year in the future.

    That means taking the word of the caregiver who has had the most contact with the person with a dementia, hopefully having had 24/7 care of them for at least two weeks within the last 6 months.

    Out of town kids, listen up here! An asterisk must be inserted here in regard to the spouse, who usually cannot be relied upon to tell the absolute truth, as the majority try to either mask their partner’s true level of deficits or conversely get so burnt out they tend to see everything as worse than it really is.

    In short-know how much help they really need now and for the immediate future. You may need to get a third party’s objective assessment of the loved ones capabilities.

  • Look at the person’s personality before the dementia.

    When they were 30-40 years old. Were they the quiet, studious type? Accountants, engineers, Technology programmers, housewives that made the family their only interest, etc.

    Were they people persons, always being with people in their jobs or at home? Salespersons, marketers, Nurse, counselors, housewives that threw a lot of parties, etc. .

    Don’t look at their personality now so much, because most people withdraw due to the disease itself, not due to their basic personality. Exempt from this are people with one of the fronto-temporal diseases.

    Do they now get agitated if they are in the presence of a small crowd? More than say, 20 people? The quieter ones generally would do better living with less people (a residential care home or a small (20 people or less) memory care unit. The gregarious, outgoing ones generally do better among more people. (a regular assisted living or a larger memory care unit of say, 20 to 45 people).

  • Finally, how much money is available for care of the person? Will the money last for the rest of their lifetime?

    Difficult questions to be sure because they deal with two unknowns; the person’s physical health in the future, the cost of care as their health fails.

    Some things can be estimated for planning purposes. If they’ve already had a heart attack or a stroke, you can estimate shorter rather than longer ( perhaps a couple of years).

    If they are over 85 (except for people like Dotty with genes that go on forever) perhaps two to five years.

    ;If under 80 longer rather than shorter, perhaps eight to twelve years.

    Costs of housing varies across the nation. Generally, but not always, costs are higher on the east and west coasts and higher in cities rather than in rural communities.

    I’m given to understand that the costs in Dallas, where I practice are halfway between the highest and the average costs for communities.

    You might be able to take Dallas’ prices as somewhat of a marker to gage what costs might be in your area. T

    The cost for independent living is around $1800 a month or $21,600 a year. The cost for regular assisted living is around $3400 a month or $40,800 a year for assisted living. The cost for memory care assisted living is around $4500 a month or $54,000 a year.

    For residential care homes, those that are not “secure” are around the cost of regular assisted living, and for those that are “secure” the costs are around the costs of memory care, maybe a few thousand dollars a year less because the building isn’t as big.

    Remember, these are approximations, you’re area will be different.

  • Start with the person’s yearly Social Security benefit amount and see what the difference to be made up amounts to.

    Look to see if they were a veteran or a deceased veteran’s spouse. If the veteran served during a war there is little known special Veteran’s benefit called Aid and Attendance which may be available. If so, it may add up to approximately $1000 a month or $12,000 a year to their income.

    Look at any other assets of value such as stocks, bonds, life insurance policies, and their home. For the home, as the real estate market is slow right now, consider a reverse mortgage or another type of loan.

    From there, you will be able to make a general guess as to how long their money will last before the have to go on Medicaid.

    Next time I will give you things to look at, and questions to ask to determine a “bad” community from an “average” one, an “average” one from a “good “one and a “good” one from a great one.

    Carole Larkin MA,CMC,CAEd,QDCS,EICS,
    is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

    More Insight and Advice for Caregivers

    Original content Carole Larkin, the Alzheimer's Reading Room.