The Hidden Restraint – Part 2 – Living Environment

Not all those who wander are lost.

by Dr. Al Power, ChangingAging Contributor

Recently, I posted a provocative argument for considering locked doors as physical restraints.  I have received many comments about the post; and as promised, I am following up with a second installment (of three), in which I will give some guidelines for those who wish to take up the challenge.

Grab a cup of  your favorite beverage—this is not a short post. Unlocking doors is neither quick nor easy; otherwise everyone would be doing it. For those who cannot visualize how this can be done safely, much groundwork may need to be done before you can succeed.

In this installment, I’ll start with a few general comments, and then address issues around the person’s current living environment.

First off, it is important to emphasize that we will never succeed in this endeavor until we believe it is possible. Those who continue to embrace medicalized views that blame “wandering” and “exit-seeking” on brain disease will not have the insight to recognize the structural, relational, and operational factors that contribute to the situation. (Photographer Dewitt Jones once said, “People say, ‘I’ll believe it when I see it’; but I say, ‘You won’t see it until you believe it.’”)

So, as I mentioned in Part 1, it is best to start by imagining that people’s perambulations are not random but purposeful, even if that purpose is not immediately obvious to us. Let’s also drop the “wandering” and “exit-seeking” terminology, so as not to overmedicalize people’s actions. This is not simply a “BPSD” (Behavioral and Psychotic Symptoms of Dementia). When you see the person instead of the disease, you can see agency instead of confusion.

Second, keep in mind that every one of us walks every day, whenever and wherever we wish. So walking—inside and outside—is normal behavior. It can certainly relate to a person’s distress or indicate an unmet need, but often it is merely an expression of that which the rest of us take for granted.

Having said that, there are two broad topics we need to explore. One is to look at the attributes of our current care environment (structural, relational, and operational) that might cause a person to become distressed or express a need to go elsewhere. Until we address these, the number of people wishing to leave at any given time will make it much more challenging for us to accommodate them.

The second broad topic is to apply the use of design, technology, and operations to afford people the right to walk freely and safely when they wish to do so. That will come in Part 3.

Now, let’s go deeper, behind the scenes. Let’s look at the subtle factors that may underlie people’s desire to leave. Unless these are recognized, all the technology in the world will not suffice to provide a sense of well-being. This discussion will not be exhaustive, but will give enough examples to get you started on auditing your own community or home.

Let’s start with the structural design, which is easiest to visualize and is also a very important factor. And as I often do, let’s employ The Eden Alternative Domains of Well-Being™ as a framework. In my adaptation of this model, I use the following ordering of the seven domains: identity, connectedness, security, autonomy, meaning, growth, and joy. If these are truly universal human needs, then we can look to see how well the built environment succeeds in these areas.

People desire comfort and familiarity (identity, connectedness). When living with changing cognition, they particularly need an environment that is not overly stressful or challenging to navigate (security, autonomy). The environment also needs to support their continuing sense of purpose, ability to engage and evolve as a person, and desire to be happy and content (meaning, growth, joy). In many ways, most long-term living environments fall short.

The layout of many living areas is not what anyone would encounter in her/his own home: long hallways, with door after door after door. There might be a “memory box” outside one’s room, but how much does the person relate to what is placed inside it, among the sea of boxes along the wall? Is it at the appropriate height for someone standing or sitting in a wheelchair to see? And does one hallway look like another? 

A company in Netherlands is producing customized door overlays that resemble the outer door of the person’s previous home. Of course the attributes of the room behind the door also need to preserve one’s sense of home, in order for this to be successful.

What personal furniture and belongings do people have, and do these trappings continue to hold meaning for them? Did they give input in setting up the room to their liking? Is the person in a double room, which introduces another aspect foreign to our own homes? Is there anything outside the bedroom that holds meaning for the person, or will they feel ill-at-ease and disconnected in the public areas?

What about lighting and sound? A noisy or chaotic environment can cause distress and fuel the need to get away. Inappropriate lighting, color, and contrast can also confuse or disable people trying to navigate independently. (See Dementia Beyond Disease for a detailed discussion of these.)

All of the other intrusions of institutional living (overhead paging, nursing stations, med rooms and utility rooms in prominent locations, bed and chair alarms, crowded living areas, etc., etc.) should go without mentioning.

Look at all of these things very closely if you have a number of people who are constantly trying to leave—there is a good chance that you are causing their distress, not the dementia! (I’ll repeat that caution for the next two sections as well.)

Also, remember that it is not enough to fill a person’s room with trappings of a past life. This may only increase their desire to “get back home.” If we are to create home for people, we need to create that nurturing place within their new environment, or it simply reminds them of the old one they have lost. That means understanding how one’s identity evolves over time, and creating meaningful and individualized engagement and connections within the new living environment. Think of all the things that “home” means to a person—to what extent are we providing each of these?

Lastly, does your community look more like a luxury hotel or a fancy shopping mall than a home? It may look good on the website, but is it providing a sense of home for those who live there, or is it creating a sense of displacement—“I don’t belong here,” “I can’t afford this,” “I need to get home,” etc.?

Many structural changes can be made, short of tearing down the building and starting over. Examples include: breaking large living areas into smaller ones (using relatively low cost renovations, half-walls, creating households within neighborhoods, etc.); removing nursing stations and substituting a den, library, or sitting area with a desk; eliminating pages, intercoms, and alarms; attention to other aspects of noise, commotion, lighting, décor, and the color contrast on flooring or doorways.

And if you decide to renovate or build anew, stop building double rooms. I have never met a person outside the nursing home that would want to live in one if given the choice—you may well be building your own future home! The Green House Project has proven that we can have superior outcomes for the same or lower operating costs, using private rooms and en suite showers; and any potential cost savings in the construction of double rooms are outweighed by the loss of privacy, security, sleep quality, infection control, roommate conflicts, etc.

Are you getting the hang of this? Until we stop driving people away from their living areas, it’s hard to unlock the doors safely. On to relational and operational factors…

I have said many times that I truly believe that if we had dedicated staff assignments and used optimal communication and facilitation skills in our daily interactions, over half of the distress we see would disappear without any other interventions. My seminars and books devote a lot of time and ink to basic face-to-face interactions, because the way in which we relate with people can have tremendous effects on their well-being or ill-being, and their desire to stay or leave.

When our interactions do not recognize and support the person’s identity, and when we present people with lots of strange faces (either through staff rotation during care, or the appearance of people entering or cutting through the living area that don’t belong there), we erode familiarity and the trust that this is a place where they want to spend their days. When we erode people’s security (e.g., staff rotations, entering rooms unannounced, standing over people when we talk ) or autonomy (deciding for, doing for, not asking for input and guidance, not taking time to understand or be understood) people will naturally seek it elsewhere.

As implied by the above, relational factors can exist in the moment, but are also an outgrowth of the operations that underlie them, such as rotating staff assignments. (If you want to see the full reasoning behind my contention that 100% dedicated staff assignments “should be considered the standard of care”—and all the evidence behind that claim—see Dementia Beyond Disease.)

Examples of other operations that disrupt and distress people include: changing people’s rooms at our convenience; providing generic, diagnosis-driven activities that hold little meaning for the individual; following an organizational hierarchy that does not give hands-on staff the autonomy or flexibility to answer the needs of the moment; or trying to squeeze people’s unique rhythms into institutional schedules of waking, sleeping, and all the activities in between.

I will not revisit my arguments against segregated “memory care” here, but my books list a variety of ways in which such environments can further erode a person’s sense of well-being.

Before we wrap up, keep in mind that all of the above principles have counterparts in community-based living; in particular, the relational and operational aspects of daily life. Even a very familiar physical environment ceases to feel like home when one’s well-being is not supported in everyday life; and people’s desire to leave (even to say they want to “go home”) can be just as intense in their own houses. Dementia Beyond Disease discusses community-based living in much more detail.

Once again, until we have addressed all of the above factors—most of which would also bother any of us in our own living environments—we can’t even begin to consider brain changes as the causative factor for the person’s actions.

I think that’s a lot to chew on for now. Try auditing your own care environments—structural, relational, and operational—and see what else you can find. The path to unlocked doors may still be a long journey for your organization. But that’s all the more reason to start today, because—like other physical restraints—it will become the norm in time. Will you be ready?

In Part 3, we’ll talk about ways to begin to make the move to unlocked doors, and I’ll share a few stories.

About Dr. Al Power, ChangingAging Contributor:

Al Power is a geriatrician, author, musician, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. You can follow his speaking schedule at http://www.alpower.net/gallenpower_schedule.htm

Reprinted from: http://changingaging.org/dementia/hidden-restraint-part-1/?utm_source=ChangingAging&utm_campaign=549c889a9e-hidden_restraint&utm_medium=email&utm_term=0_10c6c015a2-549c889a9e-57814809&mc_cid=549c889a9e&mc_eid=819b812096

The Hidden Restraint – Part 1 – Restraints

Imagine if we considered locked doors in memory care wards as restraints.

by Dr. Al Power, ChangingAging Contributor

Having given many seminars on restraint reduction 15-20 years ago, I am very familiar with how CMS defines a restraint. It’s any device, attached to or adjacent to a person’s body that prohibits freedom of movement.

So obviously a Posey vest fits the definition. But also a low chair from which a person cannot rise independently is also a restraint, even when not tied. The bottom line is that if you could move freely by yourself otherwise, and now you cannot, you are being restrained.

So by those criteria, what is another device adjacent to a person that prevents freedom of movement? How about…a locked door?

Now the Feds don’t define it as a restraint; but it fits the criteria. Imagine if in your quarterly QI reports you had to code every person behind a locked door as being restrained. How would that affect your profile?

Before you fill the comment box with questions about “How can we keep people safe without a locked door?” let’s consider a few other parallels with restraints.

Restraints were applied by well-meaning people (myself included 25 years ago) in order to protect people against falls and injury. The problem is, they didn’t do that. Subsequent studies showed that not only did restraints not prevent serious injuries—they also created severe emotional distress, due to the person being tied and feeling trapped. Furthermore, they took the focus away from understanding why the person wanted to move in the first place, thereby ignoring a host of unmet needs.

So it is with locked doors. While physical safety is always an important consideration, “security” comprises much more than physical safety—it also means emotional and psychological security, which includes such attributes as familiarity, trust, respect, dignity, privacy, and balance. The problem is that many things we do to increase physical safety help us to feel better, but actually decrease the sense of security felt by the person

.

So it is with the locked door. As I wrote in Dementia Beyond Disease:

Imagine that the person feels a need to leave because of one of a variety of reasons—that her children may need attention, that he has to go home from work, that she needs some exercise and fresh air, or simply that this place just does not feel like a place where he wants to stay all day. What will the reaction of each of these individuals be when confronted by a locked door? “You cannot go to your children,” “You cannot leave work,” “You cannot get any fresh air,” or “You must stay in this place that you do not like.

So once again, we have a staff-centered solution that actually decreases the person’s sense of security and increases both the level of anxiety and the very desire to leave as well! The person returns repeatedly to the locked door, bangs on the door, calls out for help, or otherwise expresses her distress. It is another self-fulfilling prophecy,  as the “special care unit” proves to be the home of the “most agitated residents.”

Like other restraints, the locked door also decreases staff members’ critical thinking skills. Once they know the person cannot leave, they stop thinking about why the person wanted to leave in the first place. I have a very simplistic way of looking at someone who tries to leave an area: she is either trying to find something that is not there, or else to get away from something that is there. The locked door satisfies neither of these concerns.

Furthermore, it is not always a sign of distress. It may be simply looking for exercise, fresh air, or a change of scene, as we all do. Once again, the limiting view of seeing such actions as “symptoms of dementia” pathologizes something we would all feel in that situation. I often ask people to imagine that they were spending several days to weeks in such a place and could not leave by themselves; how long could you last before you started to climb the walls??

This also explains why disguising the door as a bookshelf or other fixture is counterproductive. If there is a need or desire that leads the person to try to leave, this may hide the door, but does nothing to give them what they need. They may stop banging on the locked door, but you have done nothing to help their sense of well-being. You have focused on your tasks and ignored the person. There is no other way you can spin this.

Is it easy to operate without a locked door? No it’s not. It wasn’t easy to untie people back in the 1990s either. It took a lot of investigation, education, and operational shifts to meet people’s needs so that it could be done safely. But as the recent Facebook post by Dr. Bill Thomas shows, it can be done very successfully. And although this particular home had very few residents and enriched staffing ratios, many larger nursing homes and assisted living communities are succeeding without locked doors using the usual staffing compliment.

How do we get there? In Part 2, I’ll give you a road map…

About Dr. Al Power, ChangingAging Contributor:

Al Power is a geriatrician, author, musician, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. You can follow his speaking schedule at http://www.alpower.net/gallenpower_schedule.htm

Reprinted from: http://changingaging.org/dementia/hidden-restraint-part-1/?utm_source=ChangingAging&utm_campaign=549c889a9e-hidden_restraint&utm_medium=email&utm_term=0_10c6c015a2-549c889a9e-57814809&mc_cid=549c889a9e&mc_eid=819b812096

Sleep Issues and Sundowning Part 2

Coping strategies for sleep issues and sundowning:

Keep the home well lit in the evening. 

Adequate lighting may reduce the agitation that occurs when surroundings are dark or unfamiliar.

Make a comfortable and safe sleep environment.

The person's sleeping area should be at a comfortable temperature. Provide nightlights and other ways to keep the person safe, such as appropriate door and window locks. Door sensors and motion detectors can be used to alert family members when a person is wandering.

Maintain a schedule.

As much as possible, encourage the person with dementia to adhere to a regular routine of meals, waking up and going to bed. This will allow for more restful sleep at night.

Avoid stimulants and big dinners.

Avoid nicotine and alcohol, and restrict sweets and caffeine consumption to the morning hours. Have a large meal at lunch and keep the evening meal simple.

Plan more active days.

A person who rests most of the day is likely to be awake at night. Discourage afternoon napping and plan more challenging activities such as doctor appointments, trips and bathing in the morning or early afternoon. Encourage regular daily exercise, but no later than four hours before bedtime

Try to identify triggers.

Limit environmental distractions particularly during the evening hours (TV, children arriving, chores, loud music, etc.).

Be mindful of your own mental and physical exhaustion.

If you are feeling stressed by the late afternoon, the person may pick up on it and become agitated or confused. Try to get plenty of rest at night so you have more energy during the day.

Share your experience with others.

Join ALZConnected, our online support community and message boards, and share what response strategies have worked for you and get more ideas from other caregivers.

If the person is awake and upset:

• Approach him or her in a calm manner.
• Find out if there is something he or she needs.
• Gently remind him or her of the time.
• Avoid arguing.
• Offer reassurance that everything is all right.
• Don't use physical restraint. If the person needs to pace, allow this to continue under your supervision.

Reprinted from:  http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp?WT.mc_id=enews2016_10_28&utm_source=enews-aff-28&utm_medium=email&utm_campaign=enews-2016-10-28

Sleep Issues and Sundowning Part 1

People with Alzheimer's and dementia may have problems sleeping or increases in behavioral problems that begin at dusk and last into the night (known as sundowning).

Causes

Nighttime restlessness doesn't last forever. It typically peaks in the middle stages, and then diminishes as the disease progresses.

Scientists don't completely understand why sleep disturbances occur with Alzheimer's disease and dementia. As with changes in memory and behavior, sleep changes somehow result from the impact of Alzheimer's on the brain.

Some studies indicate as many as 20 percent of persons with Alzheimer's will experience increased confusion, anxiety and agitation beginning late in the day. Others may experience changes in their sleep schedule and restlessness during the night. This disruption in the body's sleep-wake cycle can lead to more behavioral problems.

Factors that may contribute to sundowning and sleep disturbances include:

1. End-of-day exhaustion (both mental and physical)
2. An upset in the "internal body clock," causing a biological mix-up between day and night
3.  Reduced lighting and increased shadows causing people with Alzheimer's to misinterpret what they see, and become confused and afraid
4.  Reactions to nonverbal cues of frustration from caregivers who are exhausted from their day
5. Disorientation due to the inability to separate dreams from reality when sleeping
6. Less need for sleep, which is common among older adults

Talk to a Doctor

Discuss sleep disturbances with the doctor to help identify causes and possible solutions. Physical ailments, such as urinary tract infections or incontinence problems, restless leg syndrome or sleep apnea (an abnormal breathing pattern in which people briefly stop breathing many times a night) can cause or worsen sleep problems. For sleep issues due primarily to Alzheimer's disease, most experts encourage the use of non-drug measures, rather than medication. In some cases when non-drug approaches fail, medication may be prescribed for agitation during the late afternoon and evening hours. Work with the doctor to learn both the risks and benefits of medication before making a decision.

Reprinted from:  http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp?WT.mc_id=enews2016_10_28&utm_source=enews-aff-28&utm_medium=email&utm_campaign=enews-2016-10-28

Working With A Geriatric-Care Manager

When you're exploring a foreign country, a guide who knows the terrain well can help immensely. That's just as true when entering the foreign territory of caregiving. Here, a geriatric-care manager can provide invaluable assistance for individuals and families facing challenging care decisions.

Geriatric-Care Managers come from diverse backgrounds, from nursing and social work to gerontology. These professionals can help navigate the tangles of family dynamics, round up medical care and necessary services, keep medical personnel on the same page, and cut through the baffling red tape of private businesses and government bureaucracies.

Some of the tasks geriatric-care managers routinely undertake include:

• Evaluating needs
• Connecting people to helpful services, senior housing, and long-term care facilities
•  Bringing families together to discuss options supportively
• Hiring and monitoring home care personnel
• Communicating with specialists, hospital and home care staff, and family members to coordinate care
• Alerting families to financial, medical, or legal problems and suggesting ways to circumvent difficulties
• Helping with a move to assisted living, a nursing home, an Alzheimer's care unit, or other facilities.

Some geriatric-care specialists focus on assisting older people. Others have expertise coordinating care and services for people of all ages with disabilities or debilitating illnesses.

Although working with a geriatric-care manager may be costly, such expertise can often save money and regrets, especially if you are scrambling to arrange care from afar. The cost of a geriatric-care manager is usually borne by the client or family, rarely by long-term care insurance. If you plan to work with a geriatric-care manager, be sure to get a written agreement outlining the scope of services offered and costs. This document can also help you decide which tasks, if any, might be undertaken by family and friends to save money.

To learn more about Geriatric-Care Managers, or to locate a Geriatric-Care Manager, contact the National Association of Professional Geriatric Care Managers at 520-881-8008 or www.caremanager.org.

For more on developing plans and effective strategies for the hard work of caregiving, buy Caregiver's Handbook, a Special Health Report from Harvard Medical School.

 Republished from: http://www.health.harvard.edu/

Updated: September 26, 2016

Originally published: February 2015

Column: How to fight for yourself at the hospital -
and avoid readmission

By Judith Graham, KAISER HEALTH NEWS I September 01, 2016

Everything initially went well with Barbara Charnes' surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

“I didn't see a way forward; I thought I was going to die, and I was OK with that,” Charnes remembered, thinking back to that awful time in the spring of 2015.

Her distraught husband didn't know what to do until a longtime friend - a neurologist -insisted that Charnes return to the hospital.

That's the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often institutions don't take the reality of seniors' lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

“People tell us over and over, ‘I wasn't at all prepared for what happened’ and ‘My needs weren't anticipated,” said Mary Naylor, director of the NewCourtland Center for Transitions and Health at the University of Pennsylvania.

It's a mistake to rely on hospital staff to ensure that things go smoothly; medical centers' interests - maximizing efficiency and payments, opening needed beds, avoiding penalties - are not necessarily your interests, such as recovering as well as possible, remaining independent and easing the burden on caregivers.

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Here's what doctors, health policy experts, geriatric care managers, older adults and caregivers recommend.

Start planning now

Planning for a transition home should begin as soon as you're admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so have someone you trust ask your physician how long you're likely to be hospitalized and whether you'll be sent home or to rehabilitation afterward.

Ask if a physical therapist can evaluate you or your loved one at the hospital. Can you get out of bed by yourself? Walk across the room? Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you require?

Request a consultation with a nutritionist. What kinds of foods will and won't you be able to eat? Does your diet need to change over the short term, or longer term?

Consider where you'll go next. If you or your loved one is going to need rehabilitation, now is the time to start researching facilities. Ask a hospital social worker for advice or, if you can afford it, hire a geriatric care manager (now called aging life care professionals) to walk you through your options.

Before being discharged

Don't wait to learn about the kind of care that will be required at home. Will a wound need to be dressed? A catheter need tending to? What's the best way to do this? Have a nurse show you, step by step, and then let you practice in front of her - several times, if that's what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous blood clot. But when it was Williams' turn to give the injection on her own, she panicked.

“I'm not a medical professional. I've only given allergy shots to my cats,” she said.  Fortunately, Williams found a good instructional video on the Internet and watched it over and over.

Make sure you ask your doctor to sit down and walk you through what will happen next.  How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don't be afraid to say, "Please slow down and repeat that” or “Can you be more specific?” or “Can you explain that using simple language?” said Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University's School of Medicine.

Getting ready to leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions, take good notes and stand up for your interests - especially if you feel unprepared to leave the hospital in your current state, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you'll be taking at home, if you haven't done so already. Bring in a complete list of all the prescriptions and over-the-counter medications you've been taking. You'll want to have your physician or a pharmacist go over the entire list to make sure there aren't duplicates or possibly dangerous interactions.  Some hospitals are filling new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out if equipment that's been promised has been delivered. Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed, such as disposable gloves or adult diapers? A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home health care nurses be coming to offer a helping hand? If so, has that been scheduled - and when? How often will the nurses come, and for what period of time?  What, exactly, will home health caregivers do and what other kinds of assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, cell phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health agency. If something goes wrong, you'll want to know who to contact.

Don’t leave without securing a copy of your medical records and asking the hospital to send those records to your primary care doctor.

Back at home

Seeing your primary care doctor within two weeks should be a priority. “Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important,” said Dr. Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you've just been in the hospital.

 Adjust your expectations. Up to one-third of people over 70 and half of those over 80 leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they'll experience problems with memory and attention. Returning to normal may take time or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home health agency to help arrange these visits. Often, they won’t offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation,  which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling like she'd never recover her sense of herself as an independent person was most difficult.

“I felt that my life, as I had known it, had ended," she said, "but gradually I found my way forward.”

‑ Kaiser Health News is eager to hear from readers about questions you'd like answered, problems you've been having with your care and advice you need in dealing with the health care system. Visit khn.orglcolumnists to submit your requests or tips. KHN's coverage of late life and geriatric care is supported by The John A. Hartford Foundation.

Is It Worth Paying An Expert To Help You Navigate
The Health-Care System?

By JOSEPH F. COUGHLIN

There is a new cost in retirement and older age — navigating complexity. While managing finances in retirement can be a challenge — surviving the health-care and home-care system can make the most complex portfolio or financial advisor's Monte Carlo simulation look like a family board game.

When was the last time you had to go to the hospital? Had to organize the complexities of home care for a loved one? How well do you remember the experience? Parts of it are probably something of a blur. We're as helpless we can possibly be when sick, forced to give ourselves over into the hands of others. Sometimes, the best we can manage through the ordeal of illness is to simply try to keep our heads up.

Old age and chronic illness turn that period of vulnerability into a near-constant state of affairs. Often, older adults and their families can do but nothing but hope that they will be treated by the health-care system with their best interests in mind. Sometimes they won't be — not because doctors and nurses and therapists and administrative staff aren't doing the best work they possibly can to help patients, but because a hospital is a massive institution with an endless stream of work flowing through it, not just a place of healing, but an ever-whirring bureaucratic machine. Successfully navigating that complex system is critical to both your or a loved one's health outcomes as it is in managing the costs of health care.

The complexity of the health-care system plus our rapidly aging population has given rise to a new kind of health professional, the geriatric care manager (or GCM), now officially referred to as an Aging Life Care Professional. GCMs are advocates for older adults. They typically don't personally provide care themselves. Instead they collect and present information, help to design a care plan, and navigate the health care system to implement and facilitate that plan on behalf of the family that pays them. They are guides for families who must travel the sometimes-bumpy modern road of aging.

In this sense, a GCM is more like a lawyer or a financial advisor than a doctor. A GCM's value comes primarily from having a large repository of knowledge of a complex system, not necessarily any particular hands-on expertise. Further even from lawyers and financial advisors, there is no defined educational track (yet) for geriatric care management, and a GCM doesn't need a license (yet) to practice. Although experienced nurses appear to be leading the trek in the business of care coordination and management. Geriatric care management is part of the frontier of the burgeoning advanced service economy that is being driven by an aging population.

How much does navigation expertise cost? Effective expert knowledge never comes cheap. A GCM's time runs somewhere in the neighborhood of $125-$200 an hour. If you think of geriatric care management simply as help in picking out Dad's nursing home from a list, that may sound pretty steep, a luxury affordable only to those for whom money is no object. But there could soon come a time that navigating the depths of the health care system without a care manager will seem just as foolhardy as diving into the legal system without a lawyer.

GCMs work toward the holistic well-being of their older adult clients. At the same time, they provide a family with the information to make well-informed decisions about their elder's care. With the staggeringly high costs involved in making such choices, the difference between a well-informed and a clueless decision can be thousands of dollars, not to speak of the well-being of the care recipient.

Now for a one-question health care pop quiz: Do you know what a hospital case manager is? If you or your loved one winds up in a hospital bed, case managers are the ones who decide when you leave and where you'll go to next. They have the power to choose which rehab or assisted-living facility your parent will go to. Their number-one responsibility is to open up beds for the next round of sickly individuals.

They do their best to accommodate the specific needs of patients, but with the workload they face, it's inevitable that their recommendations will not always align with what the patient thinks is best, especially when that patient is an elderly adult with a difficult confluence of issues, preferences and needs.

This is just one example of why GCMs are so important, and perhaps one day will be indispensable. They represent the power of knowledge in a world where we live under the influence of large institutions and complex system that are sometimes too big for us to grasp – just when we may need them the most and ourselves too little for them to notice.

Reprinted from: http://www.marketwatch.com/story/is-it-worth-paying-an-expert-to-help-you-navigate-health-care-in-retirement-2016-08-12
Published: Aug 12, 2016 2:59 p.m. ET

Joseph F. Coughlin, PhD (coughlin@mit.edu) is Director of the Massachusetts Institute of Technology AgeLab. His research addresses how individuals, families, businesses and governments make decisions and plan for the new future of old age.