DEMENTIA FROM ALCOHOL AND THE FAMILY IN DENIAL

Long before experiencing dementia from alcohol, the alcoholic has spent a life time trying to hide his alcoholism from family, friends and even medical professionals. So when the illness progresses to the dementing stage the  family who is in denial, now takes over not only the feelings of guilt and shame the alcoholic experienced. But also the active role of concealing the real cause of the dementia.  Dementia from alcohol doesn’t come on rapidly, but after a long time of alcohol abuse.

During those years of alcohol abuse the family maintains a code of secrecy, looking away and in so doing gives the abuser little reason to seek help. Family and friends are referred to as “co-alcoholics” due to their role in maintaining the alcoholic’s excuses, thereby promoting continued abuse.

Enabling, references the families efforts to protect the alcoholic from the consequences of their drinking. Supporting statements of needing “something to unwind,” ignoring odd or inappropriate behavior, and not identifying times when the alcoholic is not physically or emotionally available, are ways in which families protect the drinker. By not addressing the abuse the family gives the alcoholic little reason to seek help.

The alcoholic most likely, because he is enabled, will not seek help until he hits rock bottom. However more often than not, the abuser experiences dementia from alcohol and long term placement becomes necessary before he has the opportunity to make that choice. Once in long term placement the family and friends then continue the charade by finding a diagnosis of Alzheimer’s disease more acceptable than dementia from alcohol abuse.

The true numbers of persons with dementia from alcohol will most likely never be know because of the family continuing their role of “co-alcoholics.”  While healthcare professionals avoid questions about alcohol consumption so they are not seen as being “intrusive.”

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

DEMENTIA STAGES – TIME LINE

While every person with dementia has a different experience and progression. For dementia symptoms that follow the decline due to Alzheimer’s disease, these changes can be tracked in the following way.

Mild Cognitive Impairment: Very early changes noted in areas of forgetfulness, problems in locating lost/misplaced objects and loss of words. Changes cause concern yet mild cognitive impairment does not always progress to dementia. Many elderly people never experience an increase in this level of confusion. (this lose can occur very gradually over up to 10 years)

Very Early Dementia: No longer able to be gainfully employed, may becoming lost in familiar community, experiences anxiety due to having trouble always understanding environment.   Very important at this time to have hearing and vision checked to support the elder in understanding the environment. (2 years)

Early Dementia: Now diagnosed with dementia, possibly of the Alzheimer’s type, no longer able to handle finances, trouble identifying money, no longer able to do meal planning, no longer driving, unable to live independently, flattening of expression  (most noticeable in family group photos), emotional problems, withdrawn, tearfulness and sometimes anger. Starting to have problems with appropriate clothing choices and hygiene. (2 years)

Mid-Dementia Stage: Now need caregiver support for hands on assistance in hygiene, bathing, dressing, toileting, brushing teeth, significant problems with communication uses few words, is now incontinent of urine and beginning to be incontinent of bowel as well. Continues to be able to eat independently but totally dependent in all other areas of eating even cutting food and pouring beverages. (2 years)

Late Stage Dementia: Total care in all areas of life, need to be physically fed all foods, non-verbal, few people can walk at this point,  and requiring to be re-positioned when in bed, no longer moves independently.

Dementia stages vary depending on the disease causing the dementia, most notably in dementia caused by delirium or early onset dementia. The person with early onset dementia who is diagnosed at a young age goes through the dementia stages at a much faster pace.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing 

 

SUDDEN CONFUSION – Part III

May is 89 years old and suffers from sudden confusion and dementia. While her story is sad and even tragic, it really demonstrates how the combination of extreme life stressors and the smaller brain can lead to equally extreme confusion. Until recently May was functioning on a very high level for someone her age. In fact she was providing some of the care for her aged husband.

Then due to the care she was providing she required back surgery. May suffered from excruciating pain prior to her surgery as well as following the procedure. This required her to be on narcotics, something that was certainly an assault to her brain. And one of those things known to cause elderly brains to shrink.

While recovering from her surgery, her husband of so many years died. Before May could adjust to the loss of her husband she received the news that her granddaughter had suddenly and tragically died as well. May then began to mentally spiral down, with the combination of grief, pain and narcotic medications, she could no longer cope.

May became delirious causing her to now be medicated with high powered psychotropic medications. She was physically restrained in a hospital bed, confused, agitated, delirious  and manic to the point of chewing on her fingers. Resulting in chewing off 1/3 rd of one of her fingers, in her extreme mental distress.

While the story of May demonstrates how extremes can result in sudden confusion, dementia and delirium. Her life tragedies could not have been for-seen nor avoided. The loss of her husband was expected but not the loss of a much loved granddaughter. Her back problems were possibly predictable depending on how much physical support she was providing for her ailing husband. However, that she would need back surgery and be on narcotics for the pain was not predictable.

But what we don’t know about May is how good of a job she had done taking  care of her brain during those 89 years. Our assumption is that she was doing a good job taking care of her health and her brain, due to the fact that at her advanced age she could participate in her husbands care.

So for May as well as many other elderly, sudden confusion and delirium are not all that unexpected or sudden when the tragedies of life arrive.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

 

SUDDEN CONFUSION DUE TO TOXINS – Part I

Sudden confusion due to toxins may be expected and at times unexpected. Ralph was 86 when he decided that he was finished with dialysis. Ralph had end stage renal disease related to diabetes, and was on dialysis for over 10 years. Now Ralph decided that enough was enough and he wasn’t going any more. Ralph understood that this would be the end of his life. Without dialysis toxins would build up, and he would become very confused before those toxins would end his life.

Mike arrived at the nursing home due to extreme sudden confusion, related to alcohol abuse. A very long history of alcohol use and abuse. When Mike arrived he had been begging for money from strangers on the street in order to go to a hotel, because he was sure someone had put cameras all over his house. He thought he could no longer live in his home because there was a bomb, and he was being watched.

Many elderly suffer from sudden confusion due to medication mistakes. When the elder is managing their own medications and do not have a good reliable system in place, mistakes often happen. The elder then is admitted to a hospital where lab tests are run, and the medication is identified. However it might then take some time for that sudden confusion to resolve.

People as they age begin having more and more difficulty with toxins. This is due to the lifetime of environmental toxins their brain has been subjected to. Just one example is the history of using leaded gas, and the toxic effects due to use of that gas. Research studies have shown that older Americans have much higher levels of lead than younger people who were not exposed.

As the elder ages, they have a reduced brain capacity due the shrinkage of the brain. The combination of reduced brain capacity and that lifetime of exposure to many environmental toxins, put them at higher risk for sudden confusion. The elderly brain just has less to work with and at the same time more to deal with. (see also delirium)

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

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  

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