Today's post begins an in-depth look at the five overarching issues confronting the nation as a result of the Baby Boom's march towards old age. This chapter addresses the alternatives of how and where best to live dependently.
Chapter 3 (Part 1)
A PLACE CALLED HOME
“Can a man put on his socks? If not, he will soon
need someone to dress and bathe him.”
Frederick T. Sherman, M.D., Instructor
need someone to dress and bathe him.”
Frederick T. Sherman, M.D., Instructor
Mount Sinai Hospital Cont. Ed. Seminar.
Here is a common Baby Boomer Delusion: growing old and needing help with things that are now taken for granted will never happen to me.
For about 20% of boomers, this belief will be true because they will die before becoming significantly infirm. Deborah Chase’s husband will be in this category; healthy enough to go on a golfing holiday but beset with the high blood pressure that will do its damage in a massive and immediate way. The rest of the generation will benefit from improved medical care, survive into advanced old age and eventually suffer the indignities of various physical and mental impairments.
To determine whether or not a patient is “at risk” when living without help, clinicians observe a patient’s ability to accomplish five Activities of Daily Living (ADLs). When these activities become problematic, living without assistance is dangerous, unhealthy or both. Here are the things that an independent person must be able to do for themselves: (1) get dressed and undressed (Dressing), (2) transfer food to one’s mouth, chew and swallow (Eating), (3) walk around (Ambulating), (4) get to the bathroom in time, take care of business and clean oneself afterward (Toileting) and (5) keep oneself clean and relatively sanitary (Hygiene).
There you have it, Dressing, Eating, Ambulating, Toileting and Hygiene or, as the clinicians mnemonically and ironically remember them, DEATH. If you lose the ability to do one of these activities, you need a little help. Lose several and you need a lot of help. Either way, a person with one or more of these deficits has entered the realm of dependent living.
Currently in the U.S. there are four basic dependent living alternatives, not counting the dangerous, but oft chosen, alternative of toughing it out alone.
(1) Stay at home. This is almost everyone’s preferred alternative and there is much to recommend it. First, some relatives are likely nearby. Also, you know and are known in you community and deep social roots are important. Staying put is less stressful than moving. And, there is compelling medical evidence that, done right, staying at home will add to the length and quality of your life. When you are dependent at home, you will rely on your mate, other family members, friends or someone responsible and trustworthy to come in and provide the required help. Unless the caregiver is a family member or close friend, you will pay for the cost of these care giving services privately. If the ADL challenges are in their earliest stages, the amount of necessary paid help could be just a few hundred dollars a quarter. If you are eventually so impaired that you need 24/7 skilled care, privately paid assistance at home currently costs about $15,000 per month. It is a safe bet that costs will be a good bit more in 2031. As Deborah Chase’s family learned, this “at home” alternative is often complicated, aggravating and expensive. Medicare will not help, unless the in-home care is associated with a short-term medical problem. With a few pilot program exceptions, Medicaid will not pay for these types of in-home care services; not at all if you have assets. Long-term care insurance may pay, if you had the foresight to be one of the very few who bought such a policy when it was affordable. Even then, the home care benefit is likely to be only a portion of what private insurers pay should you move into a nursing home.
(2) Move in with family or friends. To a lesser degree than staying at home, living with those who truly care about you has many positive aspects. However, there is no substantive monetary relief for the care giving household in the current tax code. Neither is there much, if any, monetary assistance from Medicare, Medicaid or the private insurance sector. There may be some tax relief for the hosting household if you can be qualified as a penniless dependent and, in that case, Medicaid may help a little. Clearly, this alternative poses some challenges to the established routine and budget of the hosting household. It also requires that you adjust to living in someone else’s home and the reality of being a minor or major burden. There is a nascent but very small movement called senior co-housing (sharing a modified residence with friends or colleagues), a variation of home-based living which will be discussed later in the chapter. However, the financial and social cooperation requirements for this approach will restrict its availability to a very small slice of the aging population.
(3) Buy or lease an apartment in an Assisted Living Facility (ALF) or Group Home. These institutions are designed for those whose ADL deficits are mild to moderate and who do not require all of the clinical skills available in a nursing home. Here, communal meal service, laundry and private apartment or room maintenance are usually part of the paid package. Assistance with ADL deficits is available for additional fees. The expenses at an ALF are private-pay. The average monthly cost, not including routine assistance with daily activities, is currently $3,200. Prices vary widely across the country, however, from $1,900 per month to $5,600. Help with ADLs usually costs $15 to $30 per hour depending on the level of clinical skill required to provide the assistance. If we assume that you move to the ALF because you need some daily assistance, say two hours per day at $20 per hour, it would add another $1,120 per month in out-of-pocket expenses for a monthly total of $4,320 in 2007 dollars. If inflation averages just 2% per year, the yearly out-of-pocket expense will be almost $72,000 in 2031. And, this calculation assumes that the amount of paid care remains constant at two hours a day, a risky and likely unrealistic assumption. The downscale version of the ALF is the Residential Care Home or Group Home, a version of dependent living that has been around for generations. Small, independent, for-profit and often run by families, these are basically rooming houses for the elderly. It is estimated that half of them are not licensed and therefore fly under any regulatory radar. Very little national data is available about the overall quality of these small operators. The conventional wisdom suggests that some of them are pleasant and responsible and others far less so. Take your chances.
(4) Move into a Nursing Home. A Skilled Nursing Facility (SNF) is an institution for many who need constant hands-on care. (However, many U.S. nursing home residents are there only because it is the only alternative in their market, even though their ADL deficits are mild to moderate.) Unless you are verifiably destitute, you or your family will pay the SNF out-of-pocket. The current average monthly tab for a semi-private room is a staggering $6,025. If you want privacy, the rate escalates to $6,782. Adjusted for a theoretical 2% inflation rate, the monthly cost in 2031 will be north of $11,000. Should you go broke paying these costs, Medicaid is the social safety net that will pick up the tab. However, many SNFs accept only a limited number of Medicaid patients because of lower benefit payments (compared to private pay). So, you may eventually be moved to another SNF where there is room for lower-revenue generating Medicaid patients. For many reasons beyond just the financial, the SNF is almost everyone’s option of last resort. If you reach 85, however, the data indicate that you have an 80% chance of spending some time--recuperating from an illness or injury, or living permanently--in such an institution.
Each dependent living alternative presents unique emotional, financial, physical and psychological implications for the frail elderly and their family. When one of these alternatives become unavoidable, families often experience confusion, frustration, heartache, anger, despair, guilt, denial, remorse or even trauma. With few exceptions, transitioning from living independently -- after having done so for six or seven decades -- to any one of these four alternatives is difficult and, a blunt reminder of our mortality.
I’d Rather Stay at Home, Thank You
Nearly everyone (93%) wants to age-in-place and then die at home; at least that’s what the data indicate. However, it may not always be the best alternative and certainly not always the most affordable. Our current long-term care policies, funding mechanisms and support systems don’t often encourage this option when help is needed. Changes will have to be made to make the “at home” alternative easier, more financially sensible and less traumatic for all involved.
For those experiencing the steady erosion of their ability to be independent, a much-loved home eventually becomes an unsafe environment. Throw rugs and loose carpet menace the less than sure-footed. Hot water heaters direct scalding water to skin that no longer always senses heat and cold as it once did. Medicine cabinets and counters are filled with powerful prescription drugs for multiple ailments and often there’s the cognitive challenge of remembering which drugs to take, how many and when. Just to round out the potentially dangerous chemical cocktail are all those over-the-counter supplements, vitamins, minerals and remedies that the doctors and pharmacists rarely know about.
Getting into and out of the bathtub or shower provides an adventure of slick surfaces and missing handholds. Burned out light bulbs darken the hallways and stairs because replacing them is problematic. Repairs and maintenance to loose steps, railings or floor tiles are postponed until someone else can get to them. Meals become a succession of microwave or TV dinners because the spouse who once cooked is no longer around or because preparation of fresh food is simply too difficult. There’s also the problem of remembering to turn off the stove or oven when meal is finally prepared. And, even if the oven timer goes off, there’s the problem of hearing deficits. Adding to these lesser indignities is the embarrassment and hygiene issues resulting from the occasional or constant problem of incontinence, one of the primary reasons that the elderly end up in an institution.
And, there are those mailings and phone calls from friendly strangers announcing that you are a winner in that rich Canadian or Nigerian sweepstakes. These elder-targeted offers become more and more attractive as the senior becomes lonelier and less skeptical of such scams. Ah, home.
Clearly, not every person attaining their 85th birthday and living in their own home suffers from even one of these problems, let alone all of them. Those hail and hardy few with no deficits at 85 are a very small minority however and, unless they then die suddenly after being the picture of health into their ninth decade, they too will experience the frustrations of decline for some period of their life prior to death. When this occurs, staying at home without assistance becomes a personal safety and health gamble.
Prior to WWII, 65% of adult children lived within five miles of the place where they were raised and where their parents yet lived. When mom and/or dad became infirm, there was family nearby with whom they could live or from whom they could get assistance. Particularly in rural America, this generational family care giving still occurs, but it is far less common than it was 60 years ago. This cultural sea change is attributable to an American society and workforce that became mobile and restless in the latter half of the 20th century. There were two driving factors: (1) adult children began moving away from hometowns to further their careers and (2) many retirees migrated to warmer climates across the Sunbelt, leaving family and friends behind. Today the percentage of adult children who remain in the same general location as their parents has flip-flopped and now only 35% live within an hour’s drive.
When we look at this particular issue in the retirement destination geographies, what we see is a 65+ population, 85% of whom have no local family support.
The problems associated with the “at home” alternative have several sources. First, there is the denial factor. Frail elders are rarely the first to volunteer that they need assistance. The weekly phone conversation wherein the senior responds that he or she is “doing fine” is often a pale imitation of reality. Second is parent/child role reversal. Many adult children are uncomfortable taking the lead and many aging parents refuse to relinquish their leadership. Third is the reluctance of the elderly to pay the going price for assistance. Fourth is the confusing and fragmented nature of the local community-based care providers. Fifth is most family’s lack of clinical expertise to determine the elder’s actual assistance needs. This lack of expertise leads to reactive solutions instead of planning. Frustration ensues.
In spite of all of these potential negatives, about 2.7 million of America’s 4.7 million 85+ population continue to live in their own homes (1.7 million alone and 1 million with spouses). Over 80% of these elders are struggling with one or more of the quality of life or safety challenges mentioned earlier. By 2031 the number of frail elderly trying to live independently in their home will balloon to over 6 million. And, because the trend of adult children not living close to their parents is not likely to reverse, the “at home” alternative has the potential to become one of the nation’s leading social and health care problems.
There is nothing to suggest that we Baby Boomers will be any less stubborn about aging at home than our parents have been. If anything, given our reputation for independence and disdain for authority, the trend is likely to intensify. Therefore, America’s policy-makers must look at long-term care funding issues with a keen sense that aging safely at home is at least as big a concern as fixing the institutional problems of nursing homes or ALFs.
To be sure, aging at home is not the best alternative for some elders. Those who have ADL deficits and/or dementia issues that require 24/7 nursing care or monitoring are faced with enormously expensive paid care giving options or overwhelmingly difficult family burdens. However, millions can live very safely and contentedly at home with the appropriate support. But what is appropriate and who should decide? Most family caregivers are not clinicians or care giving professionals, nor are their elders. As a result, the care giving tends to be based on reactive and defensive perceived need, some real, some not.
Family caregivers face one or many of a myriad of tasks in support of the elder: scheduled and emergency trips to doctors, health care benefits management, insurance and payment questions, financial management, fraud prevention, home safety challenges, nutritional issues, medication management, grocery and other personal shopping, meal preparation, housekeeping, home maintenance, toileting, bathing, dressing, grooming, companionship and socialization.
The fragmented nature of the community-based services that could support a family caregiver makes it very difficult to organize and execute an effective plan for aging-at-home. This is especially true for those elders who don’t live in the same community as their family. As discussed before, this long-distance care giving scenario is the rule in American today, not the exception. As a result, support and service opportunities are missed, money is ill-spent and frustration grows as solutions are created after problems develop.
Where there is a need there is a market opportunity and, indeed, a small industry has emerged in the U.S. to address this need. The service is known as Geriatric Care Management, although it might better be described and understood as Assisted Living at Home. Consisting primarily of clinicians (nurses and social workers) the role of this small industry is to provide families with a knowledgeable representative in the community where the elder lives. The care manager’s job is to evaluate the real assistance needs of the senior, create a care plan, arrange for appropriate help, using community-based providers, monitor the quality and effectiveness of that help and generally be a quality-of-life ombudsman for the elder and the family. There are only a few thousand of these independent practitioners in the U.S. and they tend to be concentrated in the destination retirement communities of the Sunbelt where there are many frail elderly who have aged-in-place but not near their families.
For their services these practitioners charge a fee, which varies widely across the geographic markets of the U.S. The industry has a professional organization headquartered in Tucson, Arizona, The National Association of Professional Geriatric Care Managers. The association provides a certification process for practitioners but, to date, there are no state or federal licensing requirements, which means that care manager knowledge and quality can differ dramatically from one practitioner to another.
Nonetheless, with appropriate funding support, stricter competency requirements and wider consumer awareness, this Assisted Living at Home industry is destined to grow, especially if it links itself to the ALF industry where 92% of the prospective clients visit the ALF and then return home to try and “tough it out” on their own. As a better and safer at-home living option and/or an interim step to institutional living (if that becomes necessary), having a geriatric care manager who can help assure safer aging-at-home, which is more satisfying and affordable for all concerned, should be on our national policy agenda now not later. (To find a care manager in your particular area of the country, go to www.caremanager.org. and click on “Find a care manager”.)
Aging-at-home is what most Americans prefer. This alternative could be improved dramatically with common-sense policy decisions that encourage tax benefits that are beneficial to dependent elders and their informal unpaid caregivers and Medicare and Medicaid rules that encourage care at home and not in an institution. We don’t need further national debate, we need policy change.