Tag Archives: long term care

Medicaid: Long Term Care Security

As a gerontologist and a member of the Baby Boom generation, I think about what the state of long term care may be in seven years when I join the older-old, those above age 75.  Most of us would prefer to remain in our own homes as long as possible, but ultimately many of us will need more supervised care in a residential setting.  Most people don’t realize what various types of long term care cost, and many have not accumulated enough retirement savings to pay for all of the long term care they will need, especially given the extended lifespan that is now possible.  In addition, there are a lot of misperceptions about the scope of long term care benefits available through Medicare.

logo-genworth-desktopGenworth Financial Insurance Company conducts an annual survey of long term care costs in the United States.  In 2016, the national median annual cost of homemaker services in an individual’s private home came to $45,756.  The median annual cost of assisted living was $43, 536, and the median annual cost of a semi-private room in a nursing home was $82,128.  The median annual 2016 costs in Michigan were generally somewhat higher than the national median.  Genworth is predicting a 34% increase in costs in ten years, and an 80% increase in twenty years.

Americans are not great retirement savers compared with other nations, but there are reasons for that omission.  For the middle classes especially, wages have been stagnant since the 1970s, while the cost of living has increased.  The cost of a college education is more than eight times gregg-chicken-eggs-raw-eggs-eggshell-128885eater than it was in the 1970s, while the Consumer Price Index rose approximately four times  higher during the same period.  Pensions, which guaranteed retirement income for life, have virtually disappeared.  As a consequence, workers have lost one source of retirement income, since the pension replacements, the 401(k) or 403(b) plans, result primarily from employee savings, rather than employer contributions.  Finally, the economic downturn, which began earlier in Michigan than in much of the rest of the country, eroded the savings of many unemployed mature workers.

Our family story is no different; we experienced layoffs in the 2000s, which used up our retirement savings, up to then.  I paid off my student loans two years ago, and my husband just paid off his this year. We’re still paying on Parent PLUS loans for our son’s college education.  We expect to keep working as long as possible, and we’re also working hard to stay healthy so that we can do so.  But health is a result of past exposure and lifestyle, as well as present health practices, and we don’t know what lies ahead.

We do know that we can’t count on Medicare to cover our long term care expenses; it wasn’t designed for that.  Medicare will pay for skilled care, such as rehabilitation services, at home or in a nursing home,  for a limited period of time.  It will also pay for hospice care.  It does not pay for  assistance with managing personal care or housekeeping or ongoing nursing support in any setting, except for the brief period in which skilled care is also needed.  Each of us will have to manage those care expenses out of our retirement savings.  But when we live longer than expected, or health care expenses are greater than anticipated, or when both spouses require custodial care, then income and retirement assets often prove insufficient, and people rely on Medicaid to pay for their care.

Medicaid pays for the health care costs of qualifying poor people of all ages.  Low income older adults most often have Medicare coverage, and Medicaid helps them pay for the considerable out-of-pocket premiums, deductibles and coinsurance costs that Medicare does not cover, estimated to average between $1,700 to $3,000 per year.  Those costs can escalate quickly with surgery or expensive long term medications.  It also helps the low income elders receive care at home, rather than a nursing home, if they are lucky enough to qualify for a Medicaid waiver program.  The Medicaid waiver program allows for case management, in-home services, and community-based services for low income ill or disabled persons who would otherwise require nursing home placement.  In Michigan it’s called the MI Choice Waiver Program, and it’s about one third less costly than nursing home care.

But most areas have long waiting lists for Medicaid waiver services, and rural areas generally do not have sufficient supply of community-based services to keep people in their homes.  At a cost of more than $82,000 a year, most people needing custodial care in a nursing home will run out of personal savings and assets in a relatively brief period of time.  At that point more than half of nursing home residents apply for assistance from Medicaid.  Because of Medicaid older adults worry less at night about where they may end up when the money runs out.

A fixed cap on federal Medicaid payments to states could remove that sense of security.  With increasing health care costs, increasing numbers of older adults, lengthening lifespans, and a stagnant economy, states will have to reduce Medicaid spending considerably.  What will we do with ill, disabled, and poor older people who no longer receive payment for their nursing home bills?

It is these thoughts that keep me exercising most days of the week, meditating daily, and keeping up my license and professional credentials.   However, these are just stop gap measures, and I don’t feel nearly as secure.

Caregifted: Respite for Long Term Caregivers

HEATHER_MCHUGH-John-D.-and-Catherine-T-MacArthur-Foundation-261x326McArthur Foundation Fellow and poet, Heather McHugh, decided to use her McArthur award money to start a non-profit respite program for family caregivers who have been caring for a disabled person in their homes for 10 years or more.  She calls her organization Caregifted.  Caregivers who qualify submit a simple application and a medical certification of the care receiver’s need for care.  Ten caregivers each year are given week long respite trips, and the Caregifted website relates their experiences and what the week of respite means to them.

McHugh reports that a family close to her and caring for a child with disabilities made her aware of the unremitting tasks that claim the parents’ attention.  This was the inspiration for Caregifted.  I am inspired by the creativity that McHugh and her colleagues have brought to the organization.  Fund raising includes an auction of art works and a literary review. Additionally, the organization is producing a documentary on long term caregivers entitled Unsung.  Snippets of the film footage can be viewed here.  By any measure, McHugh has been successful as a poet and academic, yet she decided later in life to offer a service very little related to her earlier career path. This endeavor illustrates to me that, regardless of stage in life, we can all find ways to collaborate with like-minded others and apply our talents to improve lives and make a unique contribution.CaregifredLogo

2015 White House Conference on Aging

logo-WHCOA2015This is the year for the decennial White House Conference on Aging.  However, the Older Americans Act, which traditionally has outlined the Conference process, has not been reauthorized and the President’s budget has not been approved.  As a result, there are very little structure and no additional funds for the 2015 Conference.

nora-super-140Ms. Nora Super is the Executive Director of the Conference.  Her background includes more than twenty years experience in aging policy and community outreach.  The four themes that have emerged from community input, so far, are Retirement Security, Healthy Aging, Long-Term Services and Supports, and Elder Justice.  There is a blog for the Conference at  http://www.whitehouseconferenceonaging.gov/blog/   A number of regional forums are also scheduled.  The closest one to SE Michigan is the conference in Cleveland, OH on April 27th.

The Administration is using social and electronic media as much as possible to receive grass roots input and conduct informational meetings.  Everyone can participate by going to the web site and signing up to receive notices of events, such as webinars, and opportunities to participate.  You can also provide your thoughts and/or a story about your experience with aging or aging services, such as Medicare, Social Security, or in-home services, by submitting them through the following link:  http://www.whitehouseconferenceonaging.gov/submissions/register.aspx

Here’s the contact information if you have specific questions:

White House Conference on Aging
200 Independence Avenue SW, Suite 637D
Hubert H. Humphrey Building
Washington, DC  20201
(202) 619-3636
info@whaging.gov
www.whitehouseconferenceonaging.gov

Aging touches everyone.  I encourage you to participate in this opportunity for civic engagement at a time when our society includes the greatest proportion of older adults in history.

Sue Sweeney, Chair, Department of Aging Studies, Madonna University

Ways to Engage Persons With Dementia

Art suppliesPeople with dementia are often unable to keep themselves occupied because of the effects of the disease.  They may not be able to call to mind the possible things to do in any given moment.  If they can think of things to do, they may not be able to figure out the sequence of steps to accomplish the goal.  They may not be able to initiate an action, or the tasks needed to find and gather supplies or tools may be overwhelming.  However, individuals with cognitive impairment need stimulation and challenge to retain remaining function as long as possible, to improve or retain self-esteem, and to retain or improve quality of life.

In a residential setting, the person with dementia has the opportunity to watch others’ behavior or to interact with others in their environment.  They can be invited to a group activity conducted by one caregiver, while others prepare for a meal or attend to individual needs.  In a family setting, the caregiver may be occupied with housekeeping and meal preparation, while the affected person sits idly by.  In either case, the television can be an easy substitute for interaction and stimulation, but it, too, can become isolating and tedious when overused.

As with any aspect of dementia care, knowledge of the person and of the disease process is essential in designing and carrying out effective activities.  The project should be meaningful to the participant, often relating to hobbies, interests, or vocation from earlier in life.  The goal of the activity is engaged enjoyment, rather than achievement of a purpose or product.  Sometimes that’s hard to gauge in a person with dementia. If the person is willingly participating and gives sustained attention, it’s probably a success.  Asking questions, reminiscing, staying on task, looking for appropriate items or pieces, erect body posture, appropriate bodily movements, or an intent or relaxed facial expression are all indicators of engagement.  The signs of engagement may be very subtle.  In a dementia residence in which a singer was performing Elvis Presley songs, I watched a woman sitting glumly in her chair with her head down.  I thought that the music was lost on her, until I noticed that her toe was keeping time to the rhythm.  I caught her eye and smiled, then started singing.  She began singing with me!

Don’t expect the same activity to be well received every time.  A repertoire of pastimes is needed to meet the person where they are at the moment.  Because of a bad night, an activity which requires more concentration may not be fitting.  The time of day can dictate the appropriateness of a given pursuit.  Some people are more energetic in the morning, while others take much longer to get going.  Late afternoon and early evening may be a time for soothing music and a back rub, especially if the person is prone to the agitation that comes with sundowning.  What was a favorite activity for a long time, can become frustrating a year or so later when the disease has progressed and the person’s abilities have changed.  That activity may need to be broken down in to smaller, doable steps or modified so that the challenge is lessened.

Even though persons with dementia have limited abilities, they have the need to feel useful and contributing.  Introducing ways that they can make a contribution helps maintain their sense of self esteem and self worth.  Drawing on skills cultivated in the past, a person may be able to put stamps on envelopes, to fold clean clothing, to set the table, to sand wood, to mix cake batter, to cut out coupons, to sort objects or other aspects of daily life.  The caregiver needs to remember that the process is what is primary.  If the folded clothing are not as neat or the fork and knife are not placed properly on the table, that’s immaterial if the person enjoyed the task and felt useful.  Knowing the person and the disease process also helps assess the safety of the process.  One person with dementia may be able to use scissors or a paring knife, while another person, or the same person in later stages of the illness, may not be able to do so safely.

We all relate to the different aspects of our selves:  physical, intellectual, emotional, social, and spiritual.  Persons who suffer cognitive impairment also possess all of those human elements.  Accordingly, they need opportunities to connect with and express those parts of themselves. Again, the ways that they did so in the past can guide the caregiver to devising experiences that will be meaningful in the present.  If the person had been a churchgoer, forms of spirituality that the individual encountered in church will probably touch him or her, such as formal prayer, rituals related to religious observances, and religious holiday traditions.  Others may find spiritual fulfillment in photos of nature, poetry, or music.  The physical self can be addressed through sensory stimulation (such as aroma therapy, viewing art, tasting various foods, or a hand massage), through exercise appropriate to the person’s abilities, or through gardening or tending house plants.

The emotional aspect of self can be engaged while viewing and discussing an epic film, such as Gone With the Wind, through listening to a good story, and through reminiscing about family or important milestones in the past.  Social needs can be met by participating in an adult day program, having a visit from friends or family members, looking at family albums or video while talking about the people depicted, or playing with a pet.  And intellect can be stimulated during all of the above activities, as well as puzzles, card games, sorting objects, discussing the news, playing trivia games, making crafts, or doing art.

Persons with dementia seem to be particularly attuned to music and art,  perhaps because these stimuli are processed more by the right hemisphere and sub-cortical brain structures.  Their enjoyment is also non-verbal and subjective.  It is not uncommon to find that a cognitively impaired person who had been a musician but can now barely speak, can still sit at the piano or other instrument and play nearly as well as in the past.  Or to encounter an individual who had not spoken for some time singing along with a favorite tune from the past.  Persons with dementia, who had not seemed particularly artistic in earlier life, can become avid artists after discovering painting or collage or pottery in later years.  When given an iPod, Henry’s response to music is remarkable, as recorded in the YouTube video, narrated by Oliver Sacks: http://www.youtube.com/watch?v=5FWn4JB2YLU

Teepa Snow has published a useful essay, “Activities for People With Dementia”, which includes good points on matching the task to the individual and sample activity schedules for three demented individuals with different needs and abilities.  Another helpful resource is a brochure from the Alzheimer’s Association called “Activities at Home”,  which offers good advice on activity planning.  By using imagination and forethought, there are thousands of things a caregiver can do to engage a person with cognitive impairment.  This link from the Alzheimer’s Association can get you started, with “101 Activities”.

Like Henry,  persons dealing with cognitive impairment often have areas of ability that are preserved but undetected.  They have talents and awareness that are not expressed because there is no opportunity for them to appear.  There is still a human soul  “in there”, and our efforts to engage the whole person can reward us with startling glimpses of the person that remains and the spark of life that animates all of us.  Sue Sweeney, Chair, Gerontology Department, Madonna University