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unable to live independently, flattening of expression  (most noticeable in family group photos), emotional problems, withdrawn, tearfulness and sometimes anger.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 

 

WHAT DOES THE PERSON WITH DEMENTIA NEED?

The person with dementia needs to feel safe, but not in a way that they feel restricted. The person with dementia has a need to understand. The person with dementia has a need to be understood. The person with dementia has a need to be healthy and physically fit. The person with dementia has a need to be spoken to like an adult.

The need to feel safe, means feeling comfortable and accepted. Many times when a person with dementia moves into a nursing home, they will talk about “going home.” Home is where you are comfortable, accepted and you will not be forced into doing something. In the nursing home setting it takes about a month for many to no longer ask to go home. It is not that they are now resigned to being in the nursing home. It is that they finally feel that acceptance and feel at home.

The need to understand, and be understood. Persons with dementia have lost their normal forms of communication. They no longer can communicate verbally or non-verbally their needs. Even the person who still has words has trouble expressing their thoughts and feelings. Misinterpretation of their environment causes more misunderstanding and results in fear.

The person with dementia has a need for nutritious food and exercise.  Nutritious meals, no junk food, supplement with B vitamins for stress and brain health, fresh air and exercise results in better sleep. (B vitamins should only be taken in the morning so they do not disrupt sleep)

The person with dementia needs to be included in conversations. They need to be addressed by their preferred name or title.

The person with dementia struggles all day long to understand their world and make their needs known.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

MEMORIAL DAY – GREAT FOR REMEMBERING – HONORING AND TELLING STORIES

What I remember most was that they (my family’s military men) never talked about it, the war, “their” war. Every generation has what they consider their war. The war for my generation was the Vietnam war. For my uncles it was WW II. My great uncle Ray had served in the Army and I wish to this day that I knew where he had served, and what he saw. But he never spoke of it, not to me, not to my great-grandmother, grandmother or my mother. What we knew of the war was through news papers and later history books.

Uncle Harvey also served, in the Air Force and came back in one piece. There was that dent in the metal cover of the Bible he carried next to his heart, that he never explained. Like Uncle Ray, he had nothing to say, yet in every other way he was the consummate talker.

When Uncle Harvey returned he became a car salesman and was always known to drive the latest convertible. He was a good-looking, cigar smoking, and fun loving talker. But not about that, his war. I wonder if he just wanted to forget it, and get back his life. He went on to marry a widow of one of his buddies in the war. He raised her daughter as his own, and they had a very happy life.

Mom worked in a factory during those war years, she was a Rosie the riveter. In her later years she loved to reminisce about her years of high school. She most liked to talk about when we were kids and always said that was the best part of her life. But about those, war years that she was so very much a part of, she was unusually quiet.

Uncle Harvey’s picture in his uniform, is on the cover of my book, Please Get To Know Me – Aging with Dignity and Relevance.  My mother is sitting in front of a piano her parents had given her for her birthday. It is early 1943 and her brother is away in the war. And so his picture is on the piano and a star is in the front window.

Everyone knew these uncles had served but they never claimed a bigger share of the American dream. They never held forth in political conversations as though their opinion was any more valuable than anyone else’s, because they had served. They never got those uniforms out again, never marched in parades, and most of all never talked about it.

Like so many others just like them, all they wanted was just to fit in and pick up their lives. This is probably the biggest difference with the wars. These men came back physically whole, medicine wasn’t advanced enough to save the kinds of war injuries seen later. By Vietnam, the medical community could save so many more and we now had those severely damaged warriors.  Much more damaged in body and spirit, than seen before.

I never was able to hear my families stories, but thanks to nursing, I have been able to hear others stories, from those who need to tell.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

EARLY STAGE ALZHEIMER’S DISEASE AND CAREGIVING

Caregiving for the person in early stage of Alzheimer’s disease, is in some ways very different from the mid-stage and late stage caregiver role.

The early stage caregiver is in many ways a companion. A very alert and involved companion. A person who is proactive in preventing accidents. Looking at the confused person’s environment, while not changing the environment, (which would increase confusion) but modifying as needed for safety. Knowing the confused elder may no longer be that aware of tripping hazards, the danger of walking in busy parking lots, or handling hot food. So many areas in our, day to day lives, where our own personal safety awareness and good judgement keep us safe.

Helping the confused elder with communication difficulties. Giving the person that extra time they now need to get their thoughts in order. Not rushing the person as they are searching for words, and when providing those words, doing it in a way that is supportive not critical.

By offering frequent reminders of where the person is and what is going on. When the person has a concerned puzzled look on her face, the caregiver gently reminds her that she is at the mall, close to her home. Providing information to the date, time of year, temperature and most of all who people are in relation to the confused elder.

Keeping to a routine and familiar places gives the mildly confused person a sense of security. When that is not possible, as in the case of a change in residence. The caregiver needs to use less verbal directions and more walking a person through the new environment. Accessing that body memory through repetition, by doing something over and over, can re-create that routine and familiarity. Routine and familiarity bring comfort.

Taking time, while stepping back and trying to see what might increase confusion, and what the caregiver can provide to decrease that confusion.

The need that remains is always the same throughout the disease process, is for the the caregiver to be so very kind and understanding. Understanding of the struggles the person is facing to still be here. Support to still maintain their independence as much and as long as possible.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

7 QUESTIONS TO ASK ABOUT YOUR PATIENT FOR GOOD DEMENTIA CARE

Yes, John has dementia but that really doesn’t tell a lot about the person of John. In order to take really good care of John, you will need a lot of information.

  1. How alert and aware is John? Does he know his name, does he recognize his family, does he know their names, does he know the name of his caregiver? Can he find his way around inside his home? Can he perform a simple task by himself? Can he follow one or two step directions? How does John respond to people?
  2. How is John’s communication? What language would John most likely speak and understand? Is John’s speech usually clear and easy to understand? Does he get words mixed up, or does he make sense when he speaks?
  3. How well does he function? Does John walk, how much support does he need walking? Does John wash himself? Brush his own teeth? Can John comb his hair, or wash his face? How much assistance does he need with these daily tasks? How does John respond to help with these tasks?
  4. Can John eat by himself or does he need help?  How is his appetite, is this a problem? How much help does he need? Can he use a fork and knife safely or does he eat with a spoon? Does he have any swallowing problems, with liquids or with solid food? Does he need a special diet or soft ground up foods?
  5. Does John go to the bathroom by himself? The activity of being able to go to the bathroom independently involves several steps.  You need to know if John is able to wipe himself after a bowel movement. Is John incontinent of bowel or bladder? If John was on timed toileting would he be continent, does he just not make it there in time? Does John always go to the bathroom in the appropriate place? Does he give signs that he needs to use the bathroom?
  6. What are the usual or possibly problematic behaviors you might encounter with John? Is John’s disposition usually happy, sad, does he get angry often or easily? If John does get angry, what if anything does he do, yelling, striking out, hitting, or grabbing? If he is inclined to negative outbursts what usually calms him down? Does John have inappropriate sexual behaviors?
  7. Is John a safety hazard? If John walks does he leave, has he gotten lost? Why, has he gotten lost was he looking for someone, or did he think that there is some place he needs to be? Has he ever harmed himself or anyone else?

Whether you are a paid caregiver or a member of the family, in order to take care of someone with a dementia for a short time or consistently you need information. Important information.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

HOW TO TALK TO SOMEONE WITH DEMENTIA

When a person with dementia has a difficult time understanding or following a long conversation. Breaking the conversation into small segments, with a repeat of important information will be more effective than a long talk. Help the person with dementia stay focused by making great eye contact, holding the person’s hand, any additional focused connection. Be very attuned to facial expressions. When one word doesn’t seem to be understood, use a simpler word. Adding gestures can not only demonstrate words, but can also bring more focus to the speaker.

A person with dementia may lose their train of thought during a conversation. Helping the person with dementia with a word, or forgotten idea depends on the relationship. If the confused person feels that they are being controlled, this form of “help” may be viewed as an intrusion. If it can be done in a lighthearted way, it can guide the person back to their train of thought.

A person with dementia can be very distracted in a noisy environment. One of the first things Sara noticed about her husband was that he seemed rattled when out in a restaurant. She started requesting a table far from the kitchen, where the slightest clang of utensils, would make her husband turn to the sound. He frequently complained about the noise, even though it seemed very normal to everyone else. As time went on it became apparent that in order to even conduct the simplest of table conversation, they would need to go dining at off hours, when the restaurants were almost empty.

A person with dementia may begin to avoid crowded events, or become anxious in crowds. Not only dining out can become a problem, but going to a theater, sporting event, church service, or any event where there are large amounts of people, can be an opportunity for the confused person to become anxious. Very good pre-planning for any event becomes so important. If the caregiver doesn’t plan well, and is running late to an event, the confused person will take on the anxiety as well.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

DEMENTIA CARE – WHEN COMMUNICATION ISN’T ABOUT WHAT WE SAY

Attitude, facial expression, tone of voice, and especially body language many times are so much more important than the words, we actually speak. The nicest, and kindest words can sound mean and ugly, when used in a tone of voice that is sarcastic and demeaning. In order for those words to sound nice and kind they have to be accompanied by an equally kind facial expression and tone of voice.

The person with dementia is especially sensitive to these other ways of communication, when they have lost their words. When the person with dementia is no longer able to say a word, they no longer understand that word, when it is said to them. Saying something as simple as “Come with me,” now has to be accompanied by a smile, and gestures. By smiling and waving the person towards you, the caregiver indicates, come with me, more effectively than only using those three words.

Connecting to that inner actor in all of us, instead of just depending on words, provides great dementia care. Helping the person you care for through positive gestures such as a simple thumbs up, clapping, shaking a man’s hand, or a pat on the back. All gestures that demonstrate approval.

Concentrating and many times practicing positive body language will result in improved communication. Sitting or standing with arms crossed on your chest indicate judgment. Tapping your fingers, or shoes on a hard surface,  indicates impatience.

Instead practice open body language, having arms open, and even leaning forward slightly indicates interest and attention. The person with dementia will respond positively to someone he feels is showing him respect with their attention.

When providing dementia care for someone of another culture, make sure you know what gestures and body language are considered appropriate in their culture.

Add to these forms of non-verbal communication, some pleasant words that bless the elder, will always be beneficial for the caregiver as well.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing

SENIOR WITH ALZHEIMER’S DEMENTIA CHANGES TRYING TO COMMUNICATE

Of all of the changes the family sees in their loved one with Alzheimer’s dementia, the most frightening is personality and behavioral changes.  When the senior with dementia acts childish, irrational, stubborn, suspicious, paranoid, or becomes physically combative, the caregiver can be frightened.  The caregiver can feel that the relationship is over, this person is now a stranger.

These behaviors are not only frightening for the caregiver but even more so for the person with dementia.  Preventing behaviors is always the goal, and so much easier that dealing with a full burst of anger.

Preventing bad behaviors:

  • be alert and aware to what is going on in the environment – if the last time Grandpa became angry were there too many people, too much talking, too much noise, just too much stimulation?
  • arguing with a person with dementia never works, the person just doesn’t have the reasoning skills any longer to engage in finding solutions – divert attention and head off any confrontations
  • respect and protect the elder’s dignity , there is a real reason why bathing is such a hard task for someone with dementia – being undressed is a huge loss of control
  • make every task as simple as possible – breakdown the task into one step at a time – even though this slows progress – slow and happy is much better than fast and unhappy
  • reassure, and reassure again and again – the elder is very afraid of being abandoned – even the most demanding elder is basically afraid of abandonment

The elder with dementia doesn’t mean to be difficult. Difficult behaviors are a means of communication by the elder. The elder knows that they are missing something everyone else understands. The changes the elder feels they are no longer able to communicate with words. So the elder will try to gain control over their environment through – behaviors.

Virginia Garberding RN

Certified in Gerontology and Restorative Nursing