Given this increase in both population and acuity, the real challenge for assisted living communities is in attracting, recruiting, and retaining caregivers with sufficient skills to provide the level care necessary promised to those seniors when they moved in.  Currently, training and education of assisted living workers is abysmal.  In many states, there is no real oversight, and the industry has cobbled together a patchwork of short-term fixes.  Often, caregivers are offered little more than hour-long “inservice” presentations by whoever the administrator can get to come and give a free talk.  This degenerates into promotional opportunities for the representatives of various senior service companies wanting to market to a captive audience.  (We discuss this in great detail in our book, The Insider’s Guide to Dementia Care available on amazon.com).

We need for the assisted living industry to value their employees as much as other industries do.  This means paying for quality education in the areas that will enable employees to perform their jobs at the highest level possible.  This means that the excuses such as “we don’t have money for training,” or “there is such high turnover that we can’t invest in training,” must be set aside in favor of true culture change.  A culture change that recognizes the value and dignity of employees by providing quality education for quality care.  In a climate of sufficient clients, but dwindling workforce, such culture change will benefit both the industry and the seniors it serves.

One of the most heart wrenching experiences for families  is taking away the autonomy of their loved one who has dementia.   Families frantically search for some explanation for “resistance” to care or assistance.  We have heard from families such things as, “My dad was always so proud that he can never admit he has Alzheimer’s,” or “Mom is embarassed by her memory problems, so she won’t accept any help,” or “Doctor, if you tell her she has Alzheimer’s and must get help, she will agree.”  More recently, we have even seen families turn to the courts to obtain guardianships in the belief that a judge and legal documents will be able to convince their loved one of the diagnosis.  Needless to say, it never works that way.

A cardinal feature of Alzheimer’s is lack of insight and awareness of one’s condition.  It’s part of the disease, and no amount of persuasion, logic, argument, or authority will change that part of the disease.  The more you try to convince the person about their dementia, the more they will respond with paranoia.  For example, if you try to get the doctor to “explain” the disease, your loved one may accuse you of bribing the doctor for your own ends.  Most physicians, courts, and attorneys are unaware of this. 

A better way to approach this problem is for you to accept the necessity of assuming a parental role, anticipating that you will be viewed by your loved one as “the bad guy.”  You need to recruit a community of people who can work with you inspite of the paranoia of your loved one.  Alzheimer’s is a terrible disease, but if you approach it without sufficient knowledge, it’s even worse.

Most of us automatically think that people look forward to the Christmas holidays and want to celebrate.  Staff in facilities may have good intentions, but those intentions are likely to cause more disruption and confusion.  The faulty belief is that people with dementia also look forward to the holidays and want to celebrate the same way everyone else does or the same way they had always celebrated.  In reality, many people with dementia have lost the sense of time passing, lost the sense of anticipation of upcoming events, and have lost the sense of meaning in events.  For many with dementia, although they might be confused by a Christmas celebration, they will still retain the emotional memories of celebrations past–such as the anxiety of planning a large holiday meal, the grief associated with losses at holiday time, or the guilt of not having a gift when one has been given to them.  Imagine the woman who was always responsible for Christmas cooking, shopping, and decor suddenly confronted with a tree and a gift.  Her emotional memory will immediately jump to questions such as, “Do I have to cook?” or  ”Did I get presents for everyone?”

For these reasons, a big Christmas gathering is likely to be confusing to residents with dementia who might retain certain core memories of Christmas celebration, but who can no longer put all the hustle and bustle into a meaningful context.  Any disruption in the schedules of those with dementia is upsetting to them. If, in addition to a schedule disruption, the staff is distracted by passing out gifts and helping residents open gifts, the entire situation is one that is likely to engender anxiety and agitation.  Educated staff would know that people with dementia have difficulty interpreting social situations.  They would also know that the commotion associated with distributing and unwrapping gifts to a group of people is likely to cause those with dementia to be more confused, and therefore more needy and agitated.  Orderly, calm, and reassuring environments allow those with dementia to relax and enjoy social time.

Besides the difficulties such parties can cause for residents, what does it say to families that the facility would be passing out gifts on Christmas Eve?  Families already cope with high levels of guilt and grief during the holidays.  Knowing that “strangers” will be giving the gifts that families feel they ought to be giving only adds to that burden.

As we have said before, caring without knowledge can be as bad as knowledge without caring.  In this case, “caring” for residents might not be caring at all.

There are a couple of things wrong here.  First, as is obvious to the casual observer, if you can get respite care to attend a luncheon, you are one of the very lucky and rare caregivers who has options.  The caregiver without options is the one who needs those community organizations to invest the hours of work and planning on their behalf.  It’s ironic that the very organizations that so solicitously want to help the caregivers will not tackle one of the most pressing problems that caregivers actually have. Wouldn’t it be more meaningful to organize respite care for these homebound caregivers?  Possibly, but that’s no fun.  Planning a party is more exciting.  Besides, a big party gets more publicity than quietly providing a way for caregivers to enjoy some time to themselves. 

Second, caregivers are not hungry for food–they are hungry for information.  Websites, forums, and blogs are crowded with caregivers trying to learn more about dementia.  Training and knowledge makes a caregiver’s day-to-day job easier.  Even though there might have been lots of resource information available to caregivers at the luncheon, those ”resources” are just advertising for senior industries in the area.  Most caregivers find themselves in that role because their loved one has dementia.  What they really need is training so that they can cope with the demanding behaviors that their loved ones have.  Instead, they are provided with brochures and phone numbers of agencies that they will never have time to explore or utilize.

Does this mean we don’t appreciate caregivers?  Of course not.  But let’s stop pretending that superficial demonstrations of praise are a substitute for real help.  What really happens is that community organizations feel good about themselves, but the actual caregiver problems have not even been addressed.  It’s kind of like the old saying, “If you give a man a fish, you feed him for a day.  If you teach him to fish, you feed him for a lifetime.”   If you give a caregiver lunch, you feed the caregiver for an hour.  If you teach the caregiver better skills, you lift their burden indefinitely.

Residents of San Antonio once again seem shocked to hear that elders have been receiving deplorable care in a nursing home. The usual suspects were interviewed by the local newspaper, and concerned citizens wrote the usual letters decrying “our treatment of the vulnerable aged.”  The State regulatory agency (Texas Department of Aging and Disability Services—DADS) weighed in with concern over insufficient staff to properly inspect facilities and follow up on deficiencies.  This would all be very interesting and important if it was not the umpteenth replay of the same scenario.

We remember 5 years ago when the State agency in charge of investigating elder abuse (Adult Protective Services at the time) underwent intensive investigations by a State senator looking to distinguish himself as an advocate for the elderly.  We had extensive experience with Adult Protective Services, and had long been concerned about their lack of knowledge about aging and dementia.  Based on our experience with APS and our concern that a superficial “fix” would be applied to the problem, we attempted to meet with this legislator—to no avail.  Instead, there was broad press coverage of APS.  The bureaucracies that had oversight of APS scurried around rearranging the clichéd deck chairs on this particular Titanic, yet here we are again 5 years later with the same complaints. 

Families and concerned citizens are now calling for even more regulation of the long term care facilities, hoping that increased oversight will solve the scourge of elder abuse. The problem is not lack of staff, lack of funding, lack of regulations, or lack of regulators. The problem is lack of knowledge.  An army of regulators without adequate knowledge is useless in addressing the problems in any meaningful way.  Until value is placed on quality training, we will continue to see mistreatment of elders in long term care.

Stay tuned.

Most doctors are either ivory tower academics or harried clinicians, neither of whom have extensive experience in the places where care actually occurs–the nursing home, the dementia unit, or assisted living.  We are expert clinicians who have cared for residents in these settings.  We are the experts that the other physicians and facility administrators call when their knowledge is exhausted. 

Bet you didn’t know we existed!  That’s because there aren’t many of us out there.  Is the care in facilities the best it can be?  Well, not really.  Follow us, and we’ll show you why.