To Reorient or Validate? Caregivers and Dementia

I would guess most of us have encountered dementia. With approximately 14% of those over 70, and estimates that 40% of those over the age of 90 have the disease, the expectations are that if not yet, soon, we will all interact with someone who has the disease.

The diagnosis of dementia brings with it overwhelming scenarios for caregivers, as they deal with more than just the loss of function over time, but also the loss of personality, memories, and the relationship itself with their loved ones.  Dementia changes communication and when it begins to rob our loved ones of this gift, we feel we our ‘losing’ them, despite them physically still being present.  

One of the hallmark symptoms of patients with dementia is that they become disoriented to the current time and situation. It starts small, thinking it’s Sunday, when actually it’s Friday. Then it becomes a different season, a different year, and ultimately a different reality. This disorientation can be one of the biggest challenges to caregivers. How should you approach someone who says they need to head to work when they’ve been retired for 20 years?

Until recently, the main recommendation has been something called reality orientation. As the name suggests, clinicians recommended reorienting someone. “You can’t go to work today, you retired 20 years ago!”  This therapy includes frequent discussion of current events, using calendars, clocks, and other items to refocus patients to the here and now.  Research has suggested there is a small cognitive benefit with reality orientation, better with mild forms of dementia vs. more moderate types. 

One of the issues caregivers complain about with reality orientation, however, is a decrease in quality of life measures such as mood and behavior with this therapy. You can imagine if someone with dementia is verbally corrected continually, they might become frustrated, depressed, and even angry.

Caregivers begin to dread their interactions with loved ones, spending the majority of time reorienting them to reality. This task can spiral a pleasant encounter into something that ends in silence, both parties frustrated.

There is an alternative. In Hospice, we use something called validation therapy.  With validation therapy, caregivers enter into the world of the person with dementia. “Tell me, what’s on the agenda for work today?”  Instead of trying to bring that person into your world, validation therapy asks you to step into his world. Caregivers report increased communication, increased positive mood of the patient, and greater satisfaction with the relationship.

The idea behind validation therapy is that of respect. Even if a memory being told is incorrect, the wrong place or the wrong people, as caregivers we can smile and go along with it. This essentially validates the person with the memory, and despite the dementia, they feel heard and loved and thus everyone involved has a better quality experience.  

For those who have worried about doing harm by encouraging the improbable things patients with dementia talk about, now you know it can be beneficial and is a true therapy. 

As with most medical things, there is never an absolute. Sometimes a combination of both therapies works the best. With such a difficult disease, I think anything that can make the day to day interactions more positive should be considered. 

A Handful of Medication

If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills.  It is true there are exceptions to this rule, those individuals who only take one or two medications a day.  However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen?  A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter.  When a patient comes to see a provider with a specific complaint, they expect a remedy.  The unspoken words from every patient are “fix me”.  While most complaints aren’t easy to alleviate quickly, culture demands instant relief.  Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee.  He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution.  As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him.  Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped.  Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed.  The person is discharged with the new medication, and years later are still taking it, despite not medically needing it.  When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed.  How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed.  Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’.  Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take.  Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks.  Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins.  These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed.  The key is to ensure the pills you take are working for you, because it can be work to take them in the first place. 

A dose of dignity

The loss of control over so many aspects of our lives can be daunting as we age.  What seemed unlimited, like time and energy, begins to ebb away, and our bodies don’t always preform like we want.  Something that used to be so simple, now takes effort and at times causes discomfort.  The idea of running errands or fixing a meal can feel like an insurmountable task. 

It is no wonder that as we near the end of our lives, this loss of strength and energy to do daily things, ultimately affects our very interest in these tasks, leaving us often homebound and isolated.  To survive, we must rely on others to begin to fill in the gaps.  One by one roles and autonomy are stripped away. 

As if this weren’t hard enough, much of our identity is based on objective things like what job we have, or what tasks we perform.  Over a lifetime these roles solidify, becoming like a second skin.  This important sense of self, amidst our environment is a compass really, helping to direct our lives. To lose that can feel like being dropped in a foreign land with an illegible map.

The point of this isn’t meant to be bleak, but to first and foremost inspire compassion for those who are struggling with end of life issues around loss of control and identity, and secondly to offer a way to help.

There is a tool we use in hospice that is meant to directly counteract the downward depressive slide that comes from the loss of sense of self.  Officially it is known as dignity therapy, and it has been shown in research studies to increase dignity, sense of purpose, sense of meaning and will to live. It has also been shown to decrease suffering and depression. 

 

At its core, dignity therapy really is looking back at life in a narrative way.  It gives people the ability to tell their story through directed questioning.  When facing death, the time spent reflecting on the past allows a chance to reinterpret and reframe things.  In true dignity therapy, the narrative is recorded and transcribed through a series of encounters, creating a document to serve as a legacy that can be passed on and shared with whomever that patient wants.  The benefits then are two fold, the patient has a chance to look back at the important events of their life, which inherently adds meaning and dignity, but also creates something that will outlast themselves, thus easing the existential stress of non -existence.

Some examples of dignity therapy questions are, “What are the most important roles you have played in life?” “What are your most important accomplishments, and what do you feel most proud of?”, or “What have you learned about life that you would want to pass along to others?”

Although dignity therapy is a formal therapy, there is a message here for us all; telling the story of our lives, especially near the end is healing.  As family and friends of people who might be nearing the end of life, we can be empowered to informally do dignity therapy.  Our job is simple; show up, ask questions, and of course, listen. 

The Dreaded "Death Rattle"

Have you ever noticed how a disruptive repetitive sound has the ability to not only distract us but completely alter our mood?  A peaceful ride in the car gets ruined by the vibrating clacking of a forgotten object, or in the attempt to go to sleep, a synchronized tapping branch or chirping cricket seems to drill sound waves into the brain preventing any hope of slumber.

Although usually minor noise, our inability to silence it somehow acts as a megaphone, and everything else is drowned out save that one, grate on your nerves, sound.

It is precisely for this reason that those of us in hospice work aggressively to treat a very common non-harmful symptom that creeps up during the last days of the dying process.  This repetitive, unnatural sound has been labeled by families ‘the death rattle’, though in medical lingo it is known as terminal secretions.

Of all the symptoms we can expect to see as someone transitions from living to dying, this is the symptom feared most by family members.  Often the anxiety is in part due to what families fear the sound represents.  The sound itself is a kind of wet snore, and the moisture that has collected and rolls around as air pushes up through the vocal chords can give a gurgling noise.  People immediately assume that there must be water in someone’s lungs and even worse that they are drowning.

Thankfully this is absolutely not the case.  The sound’s origin comes quiet naturally; as the body begins to transition into dying, we slow and ultimately stop our involuntary swallow mechanism.  Unfortunately, our saliva glands do not shut down.  The saliva has nowhere to go but to the back of our throats, and as we breath, that vibrating air rattles around the moisture to cause the wet sound we hear.  The lungs are usually perfectly clear and although everyone in the room can’t get the sound out of their mind, the patient isn’t even aware.  If the patient were aware, trust me, they’d be coughing and clearing their throat, and communicating irritation.

So if this is natural, not harmful, and the person dying isn’t aware, why are we so aggressive in treating terminal secretions? Simple; this repetitive sound has the ability to distract and forever alter the memory of dying experience for those at the bedside.

There is an art to treating terminal secretions.  One of the big mistakes made by those unfamiliar with end of life issues is to utilize a suction device.  What happens, though, when a foreign object is placed in the mouth, like at the dentist? It stimulates more saliva production. So suction devices actually can make the situation worse, stimulating more and more secretions, leaving the nurses and family stuck suctioning constantly.

The best treatment is to shut off the saliva glands. This is done with medications used frequently in hospice. Timing here is everything; used too early and patients won’t be able to clear thickened secretions, used too late and it’s less effective.

Despite all of the different approaches to treat secretions, there are some who will still die with the rattle.  That is why the combination of good medications, education, and reasonable expectations serves to minimize the negative experience of this natural part of dying. 

Just one more bite

Food is a word that carries baggage. Think of all the associations when you hear the word food; hunger, diet, money, stress, planning, tradition, illness, etc.  From the moment we take our first breath, and our mothers are forced to decide to breast or bottle feed, food loses the simplicity of being just about nutrition. In the toddler stages, food becomes a symbol of control, with battles at the dinner table as parents bribe, yell, demand, or cajole children to “just try one bite”. 

As we age, food shifts and inherits meanings tied to family traditions and holidays, religious rituals, and social events. We break bread together and food becomes the vehicle to share these moments.

When we are sick, we are offered soup and juice from our family, the food meant to bring us comfort and healing. When friends are hurting, we bring over food to offer comfort and healing. 

Food is used as gifts at holidays, rewards for school, enticements for dates, and celebrations for birthdays and anniversaries.

It is no wonder then, that food, heavy with all its symbols, is a major issue at the end of life. 

Our default belief is that food, which has always healed, soothed, strengthened, and comforted us, will again serve this purpose.  But at the end of life, it doesn’t.

As the body begins its exit strategy, one of the first changes that occur is in nutrition. The digestive system slows and the stomach shrinks, so appetite diminishes. Food often doesn’t taste good, and the body actually loses the ability to digest all those nutrients sitting in the stomach.  As the rest of the body slows, and a person becomes more sedentary, the actual calorie needs lessen as well.

The weight loss that happens is not about actual food input, but the body’s ability to use that nutrition. Thus when we, albeit well meaning, push and force food above the person’s own interest, instead of offering solace, we add nausea, stomach pain, bloating and discomfort. 

When someone is in the last months of the dying process, food no longer can bring strength and energy.  No matter how many calories someone consumes they will not feel better. In fact, one paradox that can happen is that someone can actually be more tired and weak from eating, because the effort alone uses up whatever energy they had to use.

As the body enters into the last days and weeks, a new problem occurs, as swallowing becomes difficult. This is due to a combination of weakness as the body shuts down and the complexity of the swallow mechanism. Food forced at this point could actually be harmful, with choking and coughing often seen.

If our instincts are to feed for support, how can we approach food at the end of life?

I think of food as any of the other treatments we offer in hospice; as comfort.  This means, whatever and whenever someone wants to eat, they should. When they eat, they should do it because they are hungry or have a desire.  They should not eat because they feel guilty, or pushed, or to please others.  If food can’t bring strength, or make you live longer at the end, shouldn’t it at least bring comfort?

Family Dynamics

Have you ever noticed how a crisis can bring out the best or the worst in families? We see this in natural disasters, financial crisis, and physical traumas. Usually the stories we hear are the positive tales of families bonding together with incredible strength, finding themselves more resilient and closer than ever.  Less told are the stories of family implosions, where the end result is a fractured, broken mess. 

Probably, the more common finding when a family faces a crisis is not the extreme good or bad, but a mixture of both. This is especially true when a family confronts an end of life issue together. The conglomeration of personalities, conflicts, and opinions is what we call family dynamics.

This is an inescapable part of being in a family, and if you think your family is immune, you just haven’t been faced with the right crisis yet. Consider this your warning.

The reason family dynamics are so visibly apparent when a family member is facing death, has much to do with the limited time frame and finality that death introduces. No longer can differences of opinion between family members be ignored, as the immediacy of dying requires no hesitations. One person may think more treatments should be sought after, while another person thinks they should change the focus to comfort based goals. Fireworks may ensue, as the treatment seeker feels that the comfort approach is leading to death.

Besides the conflicts regarding the overall goals of where a patient is heading, family opinions on proper medication use, resource allocations, final wishes, and funeral plans can all cause battles.

At the core of some family dynamics are unresolved personal issues pertaining to the one who is dying. This can range from past wrongs, to current guilt at how the relationship has turned out, to perceived favoritism among siblings.  When all of these past slights are carried into the room of a family member who is dying, even something as simple as deciding on whether to insert a bladder catheter can erupt into conflict because it transforms into a symbol of power struggle.

I was once in a room where such a dynamic took place.  In whispered dramatic tones, family members hovered in a corner arguing about whether their dad should be forced to eat his ice cream or not. 

Meanwhile, their father quietly began to make the changes suggestive of immediate death, and I had to draw their attention back to what really mattered; the last moments of their father’s life.

This is the problem when family dynamics run amok; the focus is shifted away from the patient. This may be precisely why some families create conflict, as it becomes more comfortable than confronting the reality of dying. But in the end, it’s not supposed to be about us. In the end, it really is about the one who is dying.

We cannot escape our personalities, or the summation of all things from our family story, but we can pause and remember who the main character is when someone’s dying.  Maybe, if we’re prepared for the roller coaster of family dynamics, and get lucky, we’ll be a stronger, closer family by the end.

Ring Theory

A familiar sentiment of loved ones who journey with someone who is nearing the end of life is the fear of saying the wrong thing.  In our insulated worlds, we are so good at keeping tragic things out, that most of us haven’t witnessed examples of communication with those who have serious life limiting illnesses. 

When you talk to patients, who are at the center of it all, you will hear stories of both meaningful and insensitive things that have been said to them.  Often, those responsible for the hurtful comments don’t even realize they’re doing it.  In fact, when you break down the types of things that are insensitive, it usually revolves around self-focus versus other-focus.

For instance, when Veronica was being cared for in her home with end stage lung disease, needing breathing treatments and no longer able to get out of bed, her close friend who visited said to Veronica, “I just don’t think I can handle seeing you like this” While we can’t change how we feel about seeing people we love suffer, for Veronica to hear that was devastating. 

In Mark’s case, he was at the hospice house expecting colleagues from work to stop by. As their visit neared, he realized he was too exhausted to entertain them. One of the colleagues who had taken off work for the visit and was disappointed responded to Mark with “This isn't just about you, you know!”  Mark was bewildered as he had assumed his death was about him.

I recently read an essay discussing something the author named Ring Theory, on how to avoid these types of insensitive mistakes.  First draw a circle.  This first circle is the inner ring, and the name of the person with the trauma goes in there.  Next, draw a larger circle around the first, and put the name of the closet person to the one with the illness there.  Another ring is drawn, and this is filled with immediate family. The next ring would be close friends, and the next acquaintances.  This process can be repeated as much as needed.

These are the rules for this ring: The person in the center can complain, cry, and say anything to anyone. They can bemoan “Why me?” and they can be angry; nothing is off limits.  The rest of the people on the list can also complain, question, and cry, however, only to people in the larger rings.

When talking to someone closer to the crisis, in one of the smaller rings, you must only offer support and comfort, e.g., listening versus giving advice. Remember it’s about them and not you. 

It is normal to need to whine, or stress, or struggle, but do it with someone in a bigger ring. These were the mistakes of Veronica and Mark’s friends; they chose the wrong person to complain to. Simply put; Comfort in, dump out.

This simple rule of thumb is an excellent guide to how to talk to people with life limiting diseases. Maybe someday a card company will have a section for end of life issues, but until then just remember the rings. 

Caregivers

When we talk about chronic life limiting diseases, there is a group of people that usually gets left out. So much of the attention is focused on the patient, the disease, or the medications, that this supporting role is simply ignored.  It is quite possibly the hardest job anyone will ever be asked to do, yet there is no financial compensation or societal reward given for the task.  In fact 2 out of every 3 people will at some point have this unpaid job.  This job is adult caregiving.

Caregivers have an enormous task.  They provide for the needs of people who cannot do so for themselves.   It’s more than just a meal, or helping someone dress.  Caregiving for someone with a chronic disease involves sorting medications and treating symptoms. It entails sleepless nights and cleaning up accidents.

To those unfamiliar with caring for an adult, this may remind you of caring for young children.  This is much more, though.  Add to the similar tasks of childrearing the emotional toll of having your spouse’s personality change, such that they now belittle or berate you or worse, don’t know you.  Add in the discomfort and invasiveness of having to bathe or change your own parent.  Or consider the physical strain of lifting a 200lb person out of their chair, all the while worrying they may fall on you. 

We aren't through, because now, you must remember that often the caregiver is also giving up something.  They may have their own family or children that they cannot spend time with, or they may have a job they must take a leave of absence from, or even school, or trips that cannot be taken.

Unfortunately, this sacrifice is often taken for granted or overlooked, and by ignoring this important job the caregiver becomes isolated, depressed, and their personal health suffers. 

What help can we offer caregivers?  To start, if you know someone who is a caregiver, offer them a break.  This can be as simple as a going over for coffee and letting them talk about their strain or volunteering to sit with their loved one to let them get out of the house.  Affirming their workload in anyway is helpful.

If the person being cared for qualifies for hospice, this may be a consideration, as one of hospice’s main benefits is directed at relieving the stress of caregiving.  Hospice provides a nurse or an aid to come into the home for a visit, or an actual 5 day respite where the patient leaves the home to allow the caregiver a chance to rest.

The most helpful advice is also the hardest.  Caregivers must learn to ask for and actually receive help offered.  There is tremendous guilt associated with caregiving.  Caregivers think it is a failure if they need help or must move their loved one out of the home. Isn't it a greater failure, though, if your own health is permanently lost at the cost of doing it all on your own?

Finally, let me publicly say, “Caregivers, you are amazing. Hang in there. You are doing a terrific job!”