THE HIGH COST OF DEMENTIA TO SOCIETY, FAMILIES AND MOST OF ALL TO THE INDIVIDUAL

There is a high cost of dementia both to society as well as the individual and family. The cost to society through Medicare payments is not only high it is skyrocketing. Currently 1 in every 5 dollars spent is on elderly with dementia. The per-person cost to Medicare for taking care of persons with dementia is 19 times higher than the average per-person cost for all other seniors together. The total spending by families is close to the same as the government spends.

The cost of dementia to society:

  • Alzheimer’s is the most expensive condition in the nation. In 2014 the cost to Medicare and Medicaid was $150 billion with an estimated total cost of $214 billion. Estimates are that 2050 costs will escalate to $1.2 trillion dollars.
  • In 2014 an estimated 5.2 million Americans had dementia.
  • Of the over 5 million people with dementia age 65 and older, 3.2 million are women and 1.8 million are men.

The cost of dementia to families:

  • In 2013, 15.5 million friends and family provided 17.7 billion hours of unpaid care to those with dementia. That care was valued at $220.2 billion dollars.
  • The emotional stress of care-giving for someone with dementia is so high it takes a devastating physical toll. Dementia caregivers, had $9.3 billion dollars in healthcare costs, of their own in 2013.
  • Women are more likely to be caregivers for those with dementia, more than 3 in 5 unpaid caregivers are women.
  • Because of their caregiving duties, nearly 19 percent of women caregivers had to quit work. This causes future consequences, when those women once again want to join the workforce.

The total cost to Medicare is $37 billion annually, and estimated to be $36 billion of cost to families. As staggering as these numbers are, the cost to the individual with dementia cannot be measured. The loss of memory, inability to concentrate, loss of social skills, deterioration in personal hygiene and appearance, difficulty communicating, disorientation and more, how are these costs calculated?

The high cost of dementia is shouldered by everyone.

Virginia Garberding RN

Certified in Gerontology and restorative Nursing

DEMENTIA BEHAVIORS – WHAT IS THE FIRST QUESTION TO ASK

To know if this is really a dementia behavior, ask the question, “What if this person was 20 instead of 80 years old?” This is a question I frequently ask caregivers when they report a elder with dementia as having “behaviors.” Because if this activity or response wouldn’t be a behavior for someone 20 why should it be for someone 80.

“Mary keeps standing up.”  That is the behavior the caregiver reports about her patient Mary. Well, I asked the caregiver,  “do you keep standing up?”  “Of course I stand up, all day I am getting up and down,” the caregiver shared.  While it is more than normal to want to stand and walk. The caregiver being afraid the elder will fall if walking unattended, will often standing up to be a dementia behavior.

Just standing up, might mean the elder needs a meaningful activity and she is bored. It could be that the elder wants to get away from something such as; too much activity, too much talk, too much stimulation. It could be that all of a sudden the elder realizes she is hungry or thirsty, and just stands up to get something for herself. Or what is frequently true in Mary’s case, she just has to go to the bathroom.

Rose was over 100, and really looked good for her age. She was cared for by a live-in caregiver, and Rose always looked company ready. But once ready in the morning, Rose was seated on the couch in the TV room. The caregiver enjoyed spending her day watching daytime dramas and game shows.

Rose had vision and hearing problems, and couldn’t follow these shows. Rose wasn’t even a fan of such programming, she was too polite to say she didn’t like the caregiver’s programs.  So Rose would often just stand up to go do something else. The day was spent with Rose standing and the caregiver telling her to sit down.

For a behavior to be a dementia behavior, the question to ask is, is this activity trying to tell me something? Is there a need that is not being met? Is the elder trying to fulfill an emotional need? Is the elder trying to fulfill a physical need? What is being sought? And in the case of Rose, is the elder trying to get away from something?

Whatever the dementia behavior is, first stop and think of that question, would this be normal for a 20 year old?

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

EARLY STAGE DEMENTIA – SYMPTOMS OF EARLY CONFUSION

Harry has currently un-diagnosed early stage dementia. How can he be so happy and content, seemingly unfazed by his confusion. All due to his wife Ann’s attention.

Harry’s wife of over 45 years was at his side while he greeted friends outside of church. Harry loves to talk and has many friends. These friends don’t seem to notice that Harry is having memory retrieval problems.  And that is all due to the wife at his side who is seamlessly providing words and cues to Harry. Harry never seems to be stumbling in his conversation or  searching for words. Ann knows Harry so well that she just fills in for him with the right word at the right time and he accepts her help.

At this point in time Harry might not even be aware of his memory loss, his wife makes no effort to point it out to him. Harry drives the couple around but you know it is Ann who is navigating because Harry would be disoriented without her.

This partner in life, is now the decision maker, for today deciding where the couple will go for lunch. Because of their warm trusting relationship, Harry trusts Ann to now manage their finances.  When shopping he might just joke that the “little lady takes care of all of those money things.” This saves Harry the stress of trying to pay bills, balance the checkbook, and make poor financial decisions, all signs of early stage dementia.

Emotional outbursts and anger directed at others and situations come from anger at oneself. The person who has early stage dementia and rejects any help or assistance from others may be a risk to himself and others. The inability to change a bad behavior is a symptom of early stage dementia.

For Harry, the frustration that accompanies trying to understand where he is, what is going on, and what might be expected of him is all reduced because of his partner, and yes now his caregiver, Ann.

Virginia Garberding

Certified in Gerontology and Restorative Nursing  

WHY DOES AN ELDERLY PERSON NEED A NURSING HOME/REHAB FACILITY?

Why do people need to go to nursing home or rehab facility?

  • they need nursing help with bathing, eating, dressing, or walking
  • they have just come out of the hospital and are not ready to go home
  • they are unsafe and can no longer take care of themselves
  • they have dementia and and forget how to take care of themselves

Why do these people need so much assistance?

It may be for a medical condition that they are recovering from, or the nursing facility has the equipment or human assistance they need to recover. It can be that they are recovering from an infection and need medications better delivered at a nursing facility. It maybe that they are just too weak to live independently, or they are frail due to advanced age. The elder with poor vision can have a hard time shaving, dressing, even difficulty eating independently much less shopping for food and meal preparation.

The elder with dementia may not even remember how take care of himself, even how to brush his teeth:

  • he may not remember that he needs to brush his teeth
  • not remember that he hasn’t brushed his teeth
  • not remember what equipment he needs to brush his teeth
  • not remember how to brush his teeth, what to do first and what to do next – the entire process of brushing teeth

How much should you help a person with dementia?

“Why do you make my wife brush her own hair?” a husband asks the nursing assistant. “Isn’t that your job?”

  • the confused elder feels better about themselves if they do as much of their own care as is possible
  • the elder who participate in their own care remain healthier and stronger
  • the job of the nursing staff is to teach the confused elder how to take care of themselves
  • it is the responsibility of everyone in a nursing community to help their patients be as independent as possible
  • always support ability not disability, provide just as much assistance as the person needs

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

DEMENTIA – BAD BEHAVIOR AND HOLIDAYS

Children act out in the days leading up to holidays and parents shake their heads and say ” he has had too much sugar.” That may very well be true, yet children are certainly impacted by the hustle and bustle of holidays. And just as children are overwhelmed by the activities and anticipation, even more so is the elder with dementia.

However when the elder with dementia becomes angry and uncooperative, no one says “he has just had too much sugar.” And very often the solution proposed is some form of isolation, where what the elder may need is just the opposite. The elder with dementia may push family away with angry behaviors such as yelling, screaming, even pushing and at times throwing things.

There are also behaviors that are not as physical but equally as troubling such as, pacing, complaining, repeating themselves and general restlessness. What is important to remember is that the elder with dementia is not acting this way on purpose. The elder with dementia is always trying to understand his environment. Where he is, who is there, what is going on and most of all what might be expected of him.

While holidays are great is so many ways for the person with dementia, the music, colors, food, smells and decorations reinforce what is happening. The increase in  people, excitement, noise can push an already stressed elder over the edge. This is a good time for old fashion remedies. Activities that are calm, quiet and one on one.

  • a hand massage helps with anxiety, worry, sadness, and fearfulness
  • the old fashion back rub works wonderfully for those  in chronic pain or exhibiting irritability and anger
  • a foot massage provides calming for those with hyperactive behaviors, restlessness and pacing
  • massaging the forehead, temples and scalp help with tension and headaches

Added to the calming effect of the physical-therapeutic touch, some light smelling aroma, and you might be giving the best gift.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

HOLIDAYS A GOOD TIME TO HAVE THAT FAMILY TALK ABOUT GRANDPA’S DEMENTIA

Grandpa still lives alone in the family home and his daughters keep in constant communication with him by phone. Getting ready for the family holiday get together, required several phone calls to Grandpa to remind him of where and when they were meeting. After the big event , the daughters used their time with Grandpa to compare notes on how well their Dad is still able to function.

What they found:

  • Dad needed those frequent phone reminders – he had a 15 minute chat with the oldest daughter and the next day didn’t remember she had called
  • Dad had been mentioning that neither of his 2 hearing aids still worked, yet he was wearing both
  • Dad was now making strange and inappropriate comments to strangers, he asked a man in a restaurant if the design on his shirt was Nazi swastikas
  • Dad’s personal hygiene was in question, even though the holiday event was for an entire weekend at a hotel, Dad was wearing exactly the same clothes every day and on arrival it was apparent that Dad hadn’t bathed for some time
  • When asked what he has been eating, even though the daughters kept him well supplied with grocery delivery, he was choosing to eat all of his meals at the local fast food carry out
  • Dad had been asked to bring his latest report from his physician, after reviewing the doctor’s findings and recommendations, it was clear that Dad not only had no intention of following the doctor’s advise but didn’t understand most recommendations
  • Dad asked one of his daughters for a type of first alert button – in case he was taken to a hospital he could push the button and an ambulance or “someone” would come and take him out of the hospital

On the positive side, all of the daughters are on the same page, that Dad has dementia and needs their monitoring any changes. It is terribly hurtful and lonely to be the  only member of a family seeing signs of dementia. When even some of the family members are in denial of signs of confusion, it delays solutions. These daughters are realistic and pro-active trying to get ahead of future problems and support for their Dad.

Now after this holiday, they know that Dad might be needing some house help if the reason he doesn’t make meals is that he no longer can put a meal together. Some home help might be also needed for hygiene. One of the daughters needs to get involved in going with Dad to have his hearing aids taken care of as well as accompany him to his physician.  Dad probably would benefit by having a calendar to write down appointments and events. This way the daughters could check, just by calling and asking Dad what he has written down for a certain date.

The daughters know that as Dad continues to decline, (and they realize he will) he will be a candidate for an assistive living facility. When that day comes they will have to be united, it really helps to start now.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

HOW TO CHOOSE A NURSING HOME FOR A PERSON WITH DEMENTIA Part III

A term that has gone out of use in the nursing home community is “custodial care,” and with good reason. The current term for care is “person centered care.” These terms are the difference between living and existing.

With custodial care you are existing but do people only want to exist? Existing means to; be present, to be alive, to be in existence, and to be surviving. Custodial care meant that the nursing home was protecting the elderly. They were charged with safe keeping and at times total guardianship of the elderly in their care. As was frequently said at that time, patients were kept “clean, dry and visitor ready.”

With time, thinking changed in the nursing home community, and people started to think about how they would like to be taken care of. Being clean, dry and visitor ready didn’t seem all that appealing. Now the thought is, if you look at all of your favorite activities over a period of time, and realize that you will never again do those things, how would you feel?

Take Ann who is now in her early seventies. Ann loves to cook, especially she likes to make soup. She makes two different soups every week. She likes to bake, making her favorite pumpkin muffins often, freezing them and eating them infrequently for a treat. Ann was a school teacher for many years and now works as a teacher’s assistant three times a week. She really enjoys staying in touch with the school atmosphere, other teachers and of course the children. Ann loves music, she sings in her church’s praise choir and she enjoys playing the piano. Ann also loves to knit and does her own small art projects making bookmarks as gifts for friends. She enjoys getting together with family and friends as often as she can.

Going to a nursing home in the future where she would only exist wouldn’t work for Ann. Living compared to exiting means; continuing your life style, maintaining your habits and activities, remaining active and relevant through being busy. Having dementia or not Ann would want to continue to; enjoy being with children, having her favorite foods, doing art, listening to music, being social, and remain connected to her faith.

Finding that nursing home that understands “person centered care,” and the concept of living over existing, is the best choice for a nursing home, for a person with dementia.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

SUDDEN CONFUSION – GO TO EMERGENCY ROOM

While it is easily seen when a person has a dramatic change in consciousness and they are in a stupor or coma, delirium is not that easy to identify. The emergency department is usually the point of entry into the hospital for the confused elder. The ER runs at a high speed and it is necessary for an accurate diagnosis for the patient’s family or friends to give a good history.

Patients in a deep sleep or stupor, who can only be aroused with extreme physical stimulation are in a medical emergency. The emergency room personnel assume that the person is not always so difficult to arouse, and they recognize the emergency. However identifying changes in a patient with delirium is much more difficult because the hospital staff do not know how the patient usually is. This puts the burden of communicating the emergency situation on the accompanying family member.

It is estimated that ER physicians miss the diagnosis of delirium in 57 to 83% of cases. This wastes valuable time for the patient, time that they need for early intervention. This missed diagnosis can be due to the fact that the elder themselves do not know why they have come to the hospital. Or if the elderly person is agitated they may even be admitted to the psychiatric ward, without a good assessment.

Giving a good mental history:

  • when did you first notice a change in mental function?
  • do these changes seem to come and go – get worse or better over time
  • does the person have problems paying attention – give an example of what is normal for this person and how they are now not acting normally – having difficulty carrying on a conversation – getting distracted and changing the subject
  • patients who are inattentive may actually fall asleep when they are not engaged in conversation, this change in sleep/awake patterns needs to be stated
  • the patient now has rambling thoughts and disorganized thinking
  • if the patient has had any recent falls, this is a very important piece of information and will help the physician in their physical examination – looking for possible head trauma
  • maintain an accurate list of all of the elder’s medications as well as any over the counter medications they are taking – maintaining this list will make it much easier in an emergency situation
  • share with the emergency staff if the elder has a history of alcohol abuse or use of sedatives
  • has the elder ever experienced an episode like this in the past?

Being prepared and ready with this pertinent information is impressive and will more likely get the attention of the emergency personnel than saying “He is just not acting right.”

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

SUDDEN CONFUSION – CAN THE PERSON WITH DEMENTIA GET DELIRIUM?

Many people, including those in healthcare use the terms dementia and delirium interchangeably. Even tho they are not the same, patients can have both conditions at the same time. A person with dementia can certainly develop delirium, they are even more inclined under certain circumstances, to develop delirium.

The person with several disease processes as well as dementia, will be the person at most risk for developing delirium. Research has shown that the person with dementia has a lower mental reserve and less ability to adjust to a physical assault. That assault can come in the form of an infection such as a urinary infection or upper respiratory infection. Because the person is more vulnerable due to their dementia, they can under these circumstances develop delirium.

Other factors creating an increased likely hood of developing delirium are advanced age, history of alcohol abuse, poor nutrition, poor physical function, poor vision, hearing loss, dehydration, congestive heart failure, extreme pain (such as that related to a fracture), and many medications especially narcotics. Many times the cause of the delirium will not be found.

When the person is admitted to the hospital they are at increased risk to develop delirium if they have dementia. Due to the nature of the running of a hospital, the confused person may have physical restraints to keep them safe if they are trying to get out of bed unassisted. The elderly who are incontinent may now have a catheter for the purpose of obtaining urine specimens as well as easier care considerations. These possibilities as well as the likelihood of the elder now having an increased number of medications can result in an increased risk of developing delirium.

In the United States, hospital emergency rooms are currently seeing approximately 18 million patients 65 years and older. As the population ages, the number of visits to the emergency room by the elderly will increase dramatically as well. The potential for large numbers of the elderly population going to the emergency room for sudden confusion and developing confusion when admitted to the hospital is increasing. All of this adds up to an expectation of  not only the increase in elderly persons with dementia but also the increase in cases of delirium.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

HOW TO CHOOSE A NURSING HOME FOR A PERSON WITH DEMENTIA Part I

Choosing a nursing home for the person with dementia, is about where the person is in their disease process, as well as what their finances are and will be. The competition is currently very high for nursing homes caring for persons with Alzheimer’s disease.  This climate has brought forward many, very innovative programs. Programs that include plants, animals, special menus and dining options, activity programs for special interests, art, music, and the list goes on.  When a person is in the early stage of Alzheimer’s disease, they are more able to make use of special programs. Later in the disease process the person will have less interest or ability to participate in such programs.

Because many of the high end programs are usually found in private pay facilities, when assessing the elder’s finances, it makes good sense to use those resources when the elder can most enjoy them. Knowing that there is a progression to this disease, and that there is a slow decline, helps in planning. In the early stage of the disease, more funds should be available not only for the nursing facility but also for community events.  Going on outings, shopping, to a movie, out to lunch, to the zoo, etc., these opportunities need to be available.

When visiting a nursing home ask to see the activity calendar. Look for not only internal opportunities but for those outside events. Ask how they are funded, does facility have their own van, do nursing assistants accompany the elders as well as activity staff.

I well remember a nursing home that sponsored an outing to the zoo for its patients. The patients who participated were in early stage of Alzheimer’s disease.  Everything was going fine until the first patient went to sit down on a park bench and missed the bench falling to the ground. About 30 minutes later a second patient did the same thing. (both without injury)  The nursing home administrator decided it was time for this group to return to the facility. Thereafter a group never went out without a member of the nursing department, trained in Alzheimer’s care, in attendance.

Ask if there is a special memory loss unit? Is there a director of that unit? Interview the director and inquire not only about their program but also how they assess their patients for activities. The director should use terms like “person centered care” as well as vocalize an interest in your loved one’s history and “favorites.” Favorite foods, beverages, sports, music, any art interests, and more questions that would help the facility to design a program for your loved one.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing