Vision and perception in people with dementia, Part 1

This series of blogs is excerpted from the March 2009 issue of my publication Wiser Now Alzheimer’s Disease Caregiver Tips which focused on vision and perception in people with Alzheimer’s disease and other forms of dementia. It covers four topics:

1) There are many vision changes associated with aging that probably affect people with AD as much as the general population.
2) Aging-related vision disorders are frequently untreated when people with AD can no longer clearly express their difficulties in seeing clearly.
3) Vision, memory and perception are all linked, so that even when someone can see an object clearly, she may not be able to make sense of it.
4) There are many unknown factors, such as conditions like synesthesia that may contribute to hallucinations.

Vision challenges as we age

As we age, nearly everyone is affected by these changes in vision:

1) A diminished ability to adjust to changes in light. Going from bright sunlight to an indoor space tends to be especially difficult; it may take as long as 10 minutes for an older person’s eyes to adjust fully, so it’s important not to drag someone from an outdoor excursion inside and down the hall to her room without letting her sit just inside the door for a few minutes to give her eyes time to adjust.

2) An increased sensitivity to glare. You may see older people shrink from bright windows, light reflected on metal, shiny floors (that may look wet and unsafe), and direct sunlight. Glare is not only visually uncomfortable, but may actually cause physical pain, such as headaches, in older adults.

3) Aging eyes need much more overall light to see clearly. The average 65-year-old needs two to three times the amount of light as the average 20-year-old. People over 80 or older adults with special visual problems like those we discuss in the next section may need up to 10 times that amount of light. This is especially true when someone is doing a particular task such as needlework or a jigsaw puzzle, but also applies to eating or walking – hallways and stairways need to be well lit. In general, most lighting problems in residential care communities come from a lack of uniformity in lighting – a confusing mixture of “hot spots” and dim lighting.

4) Decreased visual acuity – formally called presbyopia, informally called “Need longer arms syndrome.” As we grow older we have a decreasing capacity to focus on objects at close range, so we either get new glasses or hold reading materials at arm’s length. The need for longer arms is caused by changes in the eye’s lens. When we are young, and shift our focus from a near object to a distant object, it is the lens which changes shape to focus on the new object. As we age, the lens becomes stiffer. It’s like having eyes that go from being an auto-focus camera, which can focus clearly on any object at any range, to a fixed-focus camera that blurs items out of its focal range. Most older adults have reading glasses for this condition, but because this condition tends to get progressively worse with age, people with dementia may no longer be wearing a prescription that meets their needs.

5) A yellowing or dulling of the lens. When we are young, the lens on our eye is nearly clear, but as we edge past 40 we usually begin to notice that our vision isn't as precise as it used to be, and we need more light for reading and close work. Tissue builds up and the lens that used to be almost clear is now distinctly yellow. Colors become muted, so that when we are 80 or older, it can be nearly impossible to tell yellow from peach, or pale lavender from pale blue.

6) Dry, itchy eyes and eyelids. These problems may be caused by eye disorders or by environmental factors such as heating or air conditioning systems, fans, wind, dry climates, air pollution (including cigarette smoke), and hair dryers. Because most older people with dry eyes are women, some think the condition may be estrogen related. Other people believe it may be an acquired allergic reaction to eye make-up in women who continue to use it. This is easily treated with eyedrops, but people with dementia may not be able to express their need for them.

Patterns of progression in Alzheimer’s disease, Part 11

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Late stage communication

In the late stage of Alzheimer’s disease, most people talk very little or not at all, although they will sometimes surprise us. One occupational therapist described working with a woman who hadn’t been able to carry on a conversation in months. The room where they were working was busy with a variety of activities. At one end, a young male care assistant was trying to flirt with a female care assistant, but she showed no interest. The woman with Alzheimer’s disease suddenly looked at the occupational therapist and said, Unnh-ah, that boy is sellin,’ but she ain’t buyin’.

And that brings us to the most important point about people in the late stage of Alzheimer’s disease: They tend to understand much more than they can express. Never underestimate what a person with Alzheimer’s disease understands, even when the person is no longer coherent. Make sure everything you say in front of someone with AD is something you hope she does understand.

Another interesting aspect of Alzheimer’s disease is that rhythm and cadence remain even when coherency departs, which brings us to the second most important point: People with Alzheimer’s disease always make sense to themselves. It’s up to us to decipher their messages whether they are expressed through words, tone of voice, body language or behaviors. Many people with Alzheimer’s disease simply stop talking in the late stage of Alzheimer’s disease, and others rattle on and on, but make no sense, if all you listen to is the words. Pick up on the feelings of that person as she expresses them by her tone and body language and an occasional word, and you may still be able to carry on the semblance of a conversation. I remember one woman whose jumbled outpouring gave me the impression that she was worried about a friend or relative who was ill. I tried to offer empathy in my tone of voice and a few comforting phrases: I can see you’re concerned. I hope she will be better soon.

My mother, on the other hand, was a cheerful woman who said almost nothing coherent during the last five years of her life, but on most afternoons about 4:00 p.m. rambled on and on and punctuated these “conversations” with laughter, so it was easy to laugh with her and hope I was on target with my responses: He was a card or That was a good time.

When a person with Alzheimer’s disease no longer talks much, it doesn’t mean you should stop trying to converse. On the contrary, people in the late stage of AD need more than ever to be acknowledged, to be called by name and to be made to feel a part of things. If you are at a loss for conversation, talk about the weather: It’s a fine day today or Gosh, it’s miserable outside today – cold and rainy. If you are a caregiver in a day or residential care setting, it is especially important to greet the people you pass in the hallway; don’t ignore them as if they were just a piece of furniture. For family caregivers, talking about the weather may not occupy much time. Consider reading aloud to them during visits – they are likely to love hearing your voice and it takes the pressure to make conversation off both of you.

Many more ideas for activities can be found in:

• My book Getting to Know the Life Stories of Older Adults (To order, click here)
• My monthly online, downloadable, subscription-based newsletter Wiser Now Alzheimer’s Disease Caregiver Tips (To order, click here)
• My online, downloadable, subscription-based Brain Aerobics Weekly (To order, click here)
• Or by contacting me at Kathy@wisernow.com

Patterns of progression in Alzheimer’s disease, Part 10

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Late stage patterns

In the late stage of Alzheimer’s disease – Reisberg’s Stage 7 – people eventually become totally dependent. They need assistance with all their ADLs (activities of daily living such as dressing, bathing, grooming), become incontinent of both bladder and bowel, and often need assistance with eating (although many can manage finger foods for quite a long while). They often speak only a few coherent words and sometimes none at all, although they still tend to understand much more than they can express, and occasionally pop out with a whole sentence that surprises everyone.

Their bodies look abnormal. Their tendency to list to one side and to lose their balance (which usually begins in Stage 6) becomes more exaggerated. Their faces often look blank and they may seem to be lost in thought. It becomes more difficult to gain and hold their attention. Both their increasing vision problems and their loss of proprioception (knowing where their body is in space) tend to make them unsure of their footing so that they go about with a downward gaze, giving them a bellybutton view of the world. They lose the ability to stay balanced while standing still, and it becomes increasingly difficult for them to step sideways or back up. Once they have attained forward motion, they may be able to keep going for awhile, but keeping them from falling and bumping into things is a major problem. They may walk into a corner and not know how to turn around. Because their stamina decreases, they need way stations – benches or other resting places – but these can also become obstacles in their paths. They may hang onto tables or push a chair along for balance, and then bruise themselves on that same aid. People in this stage look to their environment for cues, but principally they look at floors. Because they lose their 3-D vision, they see darkness as depth and a dark carpet or checkerboard tile floor as holes, making walking even trickier. Sunlight streaming into a room may create confusing patterns on a carpet; sunlight through blinds may create step-like shadows. At the same time, stairs without color contrasting strips on the edges blend together as a single surface. All of this, of course, can lead easily to falls and bruises and broken bones.

My beloved colleague Roseann Kasayka, Ph.D., who died two years ago, noted that scans which show brain wave activity in meditating monks and people in late stage Alzheimer’s disease are remarkably similar, so that it may be possible that people with late stage AD are actually in a peaceful meditative state. It’s an intriguing thought worth further pursuit.

On the other hand, it’s still possible to engage a person who is in Stage 7. Their eyes tend to be drawn to things that move or sparkle or light up and to strong contrasts like bulls’ eyes. They still react to sounds of nature and music and to touch – a gentle hand massage or the feel of satin, fur or flannel, for example. They may still enjoy fiddle objects, repetitive motion tasks and walking hand in hand or even waltzing down the hallway. (People unsteady on their feet can often do better moving to the rhythm of a slow dance.) Most will enjoy laughing and smiling nearly until their dying day.

Stage 7 is the last phase of Alzheimer’s disease. Eventually most people become bed-ridden as they lose the ability to walk; they need to be fed by hand until swallowing problems signal that the body is shutting down. Many will acquire pneumonia from aspirating food, but most can be helped to a peaceful death if they are surrounded by a caring community. In my experience, various hospice organizations are superb in making sure this happens. Others have developed Alzheimer’s-specific palliative care programs.

Next up: Communication challenges in late stage AD

Patterns of progression in Alzheimer’s disease, Part 9

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Non-verbal security blankets: Related to verbal security blankets are objects that enhance confidence. There are many athletes who have a “lucky” shirt or cap. Many people carry something in their purse or pocket for good luck or that is symbolically important in some way. People with Alzheimer’s disease often have these, too.

• Men may like to carry a newspaper or jingle coins in their pockets.
• I interviewed one tall man in Arizona who could converse easily when he was standing outdoors, wearing his cowboy hat and looking down at those around him. When he sat down indoors without his hat, his conversational abilities diminished markedly.
• Women may carry a purse or a spoon, a decorative pillow or some other household item that helps them feel grounded to a particular place.
• You may even find that giving a person with Alzheimer’s disease something to hold while you are talking with him increases his comfort in talking with you. It helps him feel relaxed and more self-assured. Sometimes that something is as simple as giving him your hand to hold – or holding his.
• Some women carry dolls or stuffed animals and sometimes they believe they are real. At other times, they are probably security blankets. When your world is constantly confusing, it helps to have something sweet to hang onto.

Word finding difficulties increase in this middle stage. Not only do people have more trouble conversing normally, but being asked to come up with a specific word (What do you call this? as you point to a watch) may be at least momentarily impossible for them. As a result, they may make-up words, called “neologisms” or “word salad.” “Thingamajig” is a widely accepted neologism that can mean almost anything, but a person with Alzheimer’s disease may use a descriptive phrase that makes some sense, as in saying “nail-banger” for “hammer.”

Other people for whom English was not their first language will begin to revert to their native language. One of the theories about the skills that are lost when we have Alzheimer’s disease is “first in, last out.” That means that the things we learned as infants and toddlers – walking, feeding ourselves, toilet training – are skills we are likely to retain until Alzheimer’s disease is quite advanced, as long as we have good care. If English is a person’s second language, it is not surprising that he would go back to the language of his birth. It’s important then for caregivers to try to learn the meaning of key phrases in that person’s language. One more word of caution, however: If a person has begun using made-up words in English, he is also likely to be using made-up words in his native language, so even a translator may not understand everything he says!

Next up: Late stage changes in AD

Patterns of progression in Alzheimer’s disease, Part 8

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Middle stage patterns in communication

Mixed-up relationships: By the middle stages, most people with Alzheimer’s disease are living in the past (or flit in and out of the present), and they may forget who has been born, who’s alive and who has died – even in the same conversation.

Perhaps because they have a hard time hanging onto present reality, people with Alzheimer’s disease often mix up names and relationships, saying “mother” when they mean “daughter,” for instance. For others, using “mother” for all close relationships may simply be a function of diminished vocabulary. If you are an aide in an adult day center and a woman of 85 asks, When is my mother coming to get me? You can usually interpret the question accurately if you say, Do you mean your daughter Julie? She’ll be here by 4:00.

Another woman I know thinks she is still a child at home. When I asked her to tell me her children’s names, she named her sisters, and that, too, happens fairly frequently.

Other people think they are young mothers and they are unable to recognize their grown children because they are living in a reality in which their children are at least 40-years younger. They may think their grown children are their contemporaries, their sisters or brothers, or sometimes even their spouses if the son looks like his father or the daughter looks like her mother.

Other people may mistake their care assistants as their children. Since they still think they live at home, you must be one of their children, because why else would you be there helping them?

Generalities as a cover-up: When people with Alzheimer’s disease have trouble providing specific answers, they often use bland generalities as a substitute, perhaps because they have found they can seem successful in doing so. For example, I was involved in producing a videotape some years back in which we interviewed a number of residents with Alzheimer’s disease in an assisted living community.

• We asked Mrs. S what she and her daughter did together. She answered: We go here and there….we go one place to another.
• We asked Col. C what countries he had been to and he answered, Oh, you name it; I guess I’ve been there.
• We asked Mrs. G what her mother (whom she believed was close by) liked to cook. She answered: What I like. We asked, What do you like? and she answered, Nice food.

We asked another woman to tell us about a place she lived that we knew was important to her. She said, Well, we had a nice house. It’s on the water. And I had my things made up nicely for walking around and of course, there was all the school business. It was very nice. We lived there twice and it was very, very nice.

This woman’s use of the phrase, “very nice,” is what we call a comfort phrase for her. It’s like a verbal security blanket. She knows this is an acceptable comment that will get her through many situations, and she uses it often.

Closely related to this is the person who gives “pat” answers no matter what you ask. Some women with Alzheimer’s disease will say, No thank you, dear, I’m fine, to anything you ask, when in reality they are cold, hungry or in pain, but find that harder to communicate.

Watch out for residents who use one phrase repeatedly. Be careful that you don’t miss real needs that are hidden by their inability to ask for specifics. For instance, it’s easy to come up to a person and hold her hand as you greet her. If her hand is cold, you can be pretty sure she is cold, no matter what the temperature is, and a sweater or in some situations, perhaps cotton gloves, would be appropriate for her.

Comfort phrases and pat answers are different from repeated questions. The person who asks you the same question a dozen times in 20 minutes really doesn’t remember asking you before – and it’s the feeling behind the question that needs answering. A person asking, “When is lunch?” may be hungry. A person asking, “When is my daughter coming?” may be feeling anxious, insecure or even fearful of being abandoned. She needs compassionate reassurance.

Next up: More communication challenges in middle stage AD

Patterns of progression in Alzheimer’s disease, Part 7

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

By stage 6, people have usually given up their sense of responsibility, so that you no longer have to talk them out of going to work or getting home to make supper for their children. Some people in this stage – having forgotten what they have forgotten – are fairly content and easily pleased by simple kindness or a little attention.

Others seem to wake each day feeling like strangers in a strange land. They often do not know where they are and have a fear of being alone. If you ask someone in Stage 6 who is living in an assisted living residence where she is, her answer is likely to be the most logical place she can come up with based on a past reality or the size of the place. She may think she is in a college dormitory, a hotel, on a cruise, or any number of other places in a city where she once lived.

Often her comfort with her surroundings is somewhat precarious, based on being in view of friendly faces or someone she knows. Therefore, she may follow you everywhere you go (called “shadowing”) and may ask questions like, “Where should I be?” or “What should I do?” Some people will sit quietly for hours as long as a person they feel safe with is present. Others are looking for things to occupy them, and can still successfully participate in activities requiring repetitive actions (sweeping, folding napkins, wiping counters), simple sorting (poker chips by color, screws from bolts) or rote memory (washing dishes, singing songs) to name just a few examples.

This is a time when language abilities diminish significantly and when recent memory constantly disappears so that for the person in Stage 6 yesterday might never have happened. However, feelings remain strong. A person may not remember what happened at lunch to upset her, but the feelings of being upset may linger through the afternoon unless something pleasant happens to counteract it.

People in Stage 6 tend to need significant assistance with all their dressing and grooming tasks including toileting. They may begin to be incontinent of bladder and bowel. If they didn’t begin to have a disruption of their sleep/wake cycle in Stage 5, they may have it now, but others begin to seem to need more sleep, including more daytime naps.

They usually still respond to their own name (“Mary” – not “Mother” or “Mrs. Jones”) but they no longer recognize themselves in the mirror, probably because they are living in a past reality now more or less full-time; they may believe they are young mothers or even schoolchildren, so the old woman in the mirror is not someone they know. For this same reason – the fact that they imagine themselves much younger – they often do not know the names of many of the people who are close to them (or do not associate our aging faces with the names), although they will respond to familiar faces and they always know who loves them and whom they love.

Next up: Communication challenges in middle stage AD

Patterns of progression in Alzheimer’s disease, Part 6

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

The primary motivation of people in Stage 6 is comfort. In terms of dress, people in Stage 6 are seldom interested in keeping up appearances. If you've ever come home from a night of partying or from work after a long day of "looking professional" and the first thing you do is take off your jewelry, your belt and your shoes, you have an idea of how a person in stage 6 is likely to react to being “gussied up.” Comfort for a person in stage 6 can also extend to removing eyeglasses, dentures and hearing aides, and that requires vigilance. I know of one nursing home resident who, as she finished toileting, scratched her ear, felt the hearing aid, took it off and looked at it, and before anyone realized what was happening, flushed it down the toilet. When questioned about what she had done, she said, "I threw that turd away." Many share the sentiment.

Pay attention to the fact that seeking comfort may be based on experiencing real discomfort. Glasses may be dirty or the prescription may no longer be appropriate. Dentures may not fit well anymore or they may have food particles caught beneath them. Hearing aids may be hard for the person to adjust or may not seem to help. Pay attention to the message behind the behavior because by this time, a person’s ability to verbally express the cause of his discomfort is long gone.

If you haven’t done so before, Stage 6 is the time to simplify. People in Stage 6 often resist changing clothes, probably for a number of logical reasons:

• Their ability to dress themselves independently has disappeared, and left to their own devices, they may put pants on backwards, shoes on the wrong feet or underwear over pants.
• They may have some awareness of their difficulties; therefore, once they are dressed, they see no reason to change clothes, and may find even the thought exhausting.
• They may also find the process literally painful as physical changes make them less flexible or chronic conditions such as arthritis intensify.
• They may find the ordinary clothes they wore in the past challenging. Stage 6 is when clothes that pull on, pull over, slip on, fit loosely, feel soft, zip rather than button and tighten with Velcro rather than shoestrings, are all appropriate.

Next up: More middle stage changes in AD

Patterns of progression in Alzheimer’s disease, Part 5

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

In Stage 5, math, number and language deficits tend to grow more pronounced. People may not remember their address or phone. They may not be able to retain the names of three items on a grocery list or tell you a watch is a watch. But many people at this stage are aware of their growing deficits and anxious about it. They often try to hang onto every bit of independence they can, so that if you are a female caregiver and you tell a man with AD that it is time for him to get dressed, he is likely to say, Who died and made you boss?

However, most of today’s older men were raised with courtly manners, and years of "honey-do" lists from their wives and mothers. If, instead of giving an order, you can preface your request with a phrase like, Could you please help me with this? you are likely to be more successful.

Both their manners and their deeply ingrained tendency to be helpful make people in this stage natural hosts and greeters, so tap into this at social events. Station them at the door to welcome others or ask them to pass out drinks or desserts. Precisely because they want to hang onto their remaining strengths, they appreciate opportunities to be helpful and in residential or day care settings will often “parent” people in Stage 6 by helping with activities or grooming tasks such as brushing someone’s hair. My creative friend, Cameron Camp, Ph.D., former director of the Myers Research Institute, had success on that campus involving people in Stages 5 and 6 in a comedy club. Some people can still tell their own jokes, but Cameron provided others in large print on strips of paper that could be drawn from a hat and read. People who didn’t want to be jokesters were given other tasks – greeter, lemonade distributor, and audience members.

People in Stage 5 are usually able to go the bathroom on their own and eat on their own. They may be able to help with basic food preparation such as chopping vegetables, snapping beans, or stirring the cake batter, but they usually cannot be counted on to use a stove safely or follow a recipe without supervision. They tend to lose visual-spatial abilities so that setting a table or loading a dishwasher may be too challenging. They can still handle most grooming tasks, but some need their choices simplified – their clothes laid out in the order for putting them on, toothpaste put on their toothbrush and distractions such as cologne, lotions and hair spray removed from their line of vision. (This is definitely needed by Stage 6.)

Stage 5 is also when individual strengths are likely to begin showing up. Someone who was an accountant may not have the math deficits typical of this stage. A person who always did crossword puzzles and other word games may still be better than her peers at them. People who play a musical instrument may make some mistakes, but retain the basic skill until very late in the disease process.

There are also physical changes that tend to take place in Stage 5 as damage in the brain spreads to the hypothalamus – the part of the brain that controls body temperature and sleep. Difficulty sleeping or sleeping for an hour or two and then getting up and walking around are common in Stage 5 (and/or 6) and understandably upsetting to family caregivers who need their rest. People in Stage 5 also have a tendency to be colder than the rest of us, and nighttime restlessness and the tendency to be cold are sometimes related.

Next up: More middle stage changes in AD

Patterns of progression in Alzheimer’s disease, Part 4

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Middle stage patterns

People with early stage dementia can usually still live alone with some assistance, especially if they have a spouse or adult child to help “fill in the gaps.” Assistive devices can also help.

By the middle stage or according to Reisberg’s GDS, Stage 5, people with AD are no longer capable of living safely on their own, although again, many people will continue to live at home under the careful supervision of a spouse, adult child or other caregiver. Others will move to an assisted living community or nursing home at this point.

Those who are living in a residential care community often look like visitors. They may be dressed up as if they are going out: men in suits or natty sports clothes with keys and wallets in their pockets; women in dresses, hose, make-up, jewelry and carrying purses. What’s more, they often believe they are visitors – why else would they be carrying their purses? If you come in as a real visitor, you may find that you can talk with a person in Stage 5 for several minutes without realizing she has dementia, especially if she is having a good day.

People in Stage 5 are dressed up because they believe they still have responsibilities (places to go and people to see), but their perceptions of their responsibilities are based on misperceptions, and they don't welcome your interference. They still have volition; they can form a thought, plan an action and follow-through. (Although some people may lose their train of thought along the way, lose the goal, and are perceived by others as purposeless wanderers.) Typically, they are living in (or float in and out of) a past reality so that a woman may believe she must be at home when her children return from school. Look for agitation at what would have been normal transition times in their daily routines, such as mid- to late afternoon. If you dare to suggest her children are long grown, her reaction is likely to be panic that you don’t believe her.

When you consider that they are often living at least part-time in a past reality, it is not surprising that people in the middle stage have increasing difficulty with time and dates. Indeed, time begins to lose its meaning. I’ll be back in 10 minutes, is not something they may be able to differentiate from 10 hours. They may have no idea what season it is without daily reminders: Good morning, George! Time to get up; it’s a beautiful spring morning.

Next up: More middle stage changes in AD

Patterns of progression in Alzheimer’s disease, Part 3

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Early stage patterns in communication
In the early stages, people often have word-finding difficulties. It’s the sort of thing that happens to all of us when we say, It’s on the tip of my tongue, but we simply can’t come up with the word we want. Sometimes we forget a name or lose our train of thought as we’re speaking. Those things tend to happen more often when we are stressed and literally “have a lot on our minds.”

Similar to this are malapropisms. Casey Stengel one day addressed his team by saying, Now all you fellows line up alphabetically by height. What was the real message? Who knows? Confusing responses are given by people with Alzheimer’s disease regularly and can be more upsetting when they realize others expect answers that they can’t give. Barb, on the videotape Inside Looking Out, describes how when she tried to explain something and couldn’t come up with a word, the woman she was speaking with gave her an impatient motioning gesture, meaning, Well, come on; out with it! Barb said she was devastated by that gesture. People with AD are often filled with self-doubt; they don’t need their confidence further undermined by our impatience. But the fact that Barb could recount the story shows that people in the early stages of AD are often highly competent in articulating their feelings and carrying on normal conversations.

In this early stage (which can last for years), they are most often “tongue-tied” because we ask them questions related to short-term memory that were never recorded in their brains. They are stymied by seemingly simple questions like, What did you have for lunch? or What did you watch on TV last night?

Next up: Middle stage changes in AD

Patterns of progression in Alzheimer’s disease, Part 2

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Early stage patterns, continued

Math deficits appear in Stage 3. As a family caregiver, you may notice this when your spouse asks you to take over the balancing of the checkbook, pay the cashier at the grocery store or figure the tip at a restaurant. You may also notice that your loved one is unsure of the day of the week or the date. By Stage 4, he misses the date by a week or more, and especially near transition months, may not remember the year. It is common for people in Stages 3 and 4 to have trouble telling time, especially when asked at any point that is not the hour or half hour. (Digital watches may make things easier, but I don't know of research proving that.)

Nevertheless, people in Stages 3 and 4 are "oriented to time and person", that is, they are living in the present, know who they are and recognize familiar faces, even if they can’t always remember names. They may have forgotten some things in their personal past, but in Stage 3, they are usually able to recall at least one childhood teacher or friend. In Stage 4, the memories become more fragmented and fall out of chronological sequence, so that they may remember the schools they attended, but not their order. Their spouse – having heard the stories many times – is likely to recall more than they can.

In Stage 3, people can recall recent major events, but become flummoxed trying to answer detailed questions about these events. By Stage 4, they often can't recall even major events of the previous week or weekend, may not be able to recall what transpired the previous evening on their favorite televisions shows and are likely to have only vague knowledge of current events. They may read the newspaper but quickly forget what they’ve read.

Note of caution: The fact that they forget what they read or watch, does not mean they no longer enjoy the reading and watching!

People who are still working are likely to lose their jobs at this point, but if you and your spouse are retired, you are more likely to notice deficits in household chores. Your wife is no longer able to follow a recipe and begins to avoid cooking. She no longer wants to do the grocery shopping because the massive aisles of products and the decisions to be made are too confusing. Your husband doesn't remember how to mow the lawn or use his power tools, and may have an accident or destroy equipment trying. However, jobs that require repetitive actions may still be able to be done with alacrity: hanging clothes on a line (as opposed to operating the controls on a dryer), ironing, sanding wood, (sometimes) painting.

Social events may begin to be avoided because they are too confusing. Your loved one may have forgotten the rules to playing cards or bingo, or may no longer be able to add up his golf score. She may make excuses to avoid going to church or synagogue where she is expected to greet and recognize people whom she has forgotten. You will notice a withdrawal from situations perceived as intimidating, but the reasons given are likely to be a “cover up”: I’ve lost interest or I don’t feel like it today. If you press her, she may become angry.

This is where the Alzheimer’s Association tends to identify a personality change, but I disagree. It’s a coping mechanism; if I’m afraid I can’t do something or – even more frightening – afraid that I am losing my mind, it’s quite logical to do my best to pretend I don’t want to do that thing and hope you won’t notice my deficit.

This early stage is often a strain on marriages when one spouse has AD because the way a couple has done things for 50 years suddenly isn’t working anymore and change is hard, especially if the person with dementia is perceived as “just being stubborn,” or “just trying to irritate me.” A person with AD may indeed be willfully resistant to a request, but the resistance is based on the person’s underlying fear or confusion or simple fatigue (concentrating takes too much energy). The person is not deliberately trying to upset his or her spouse or other family caregiver. This situation tends to be aggravated by the fact that the well family member doesn’t want to believe something serious is wrong.

Next up: A brief summary of communication changes in early stage AD

Patterns of progression in Alzheimer’s disease, Part 1

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. Over the next few weeks I am will be providing excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Dr. Barry Reisberg of New York University has been studying Alzheimer’s disease for decades, and one of the ways he gained notoriety early on was in developing what he called a Global Deterioration Scale (GDS) which outlines the order in which people with Alzheimer’s disease tend to lose specific skills. He came up with seven stages, although stage one is basically any normal adult, and stage two is any normally aging adult, so concern only arises if people enter stage three. The later stages also have subsets: 7a, 7b, 7c and so on.

For a long time his work was somewhat controversial. Opponents felt that categorizing people with dementia – even into early, middle and late stage categories – was subjecting them to labels that limited expectations of them. The number one tenet to remember in this field is: If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease. In other words, everyone with AD remains a unique individual and deserves to be treated as that individual, not as a “disease.”

The National Alzheimer’s Association now uses Reisberg’s stages to help identify common patterns of progression, but always with this caveat: [I]t is important to note that all stages are artificial benchmarks in a continuous process that can vary greatly from one person to another.

Early stage patterns

Using Dr. Barry Reisberg’s Global Deterioration Scale, early stage dementia is equivalent to his Stages 3 and 4, middle stage is equivalent to his Stages 5 and 6, and late stage is equivalent to his Stage 7, but there is tremendous variation within each of those stages. For example:

In Stage 3, a person with AD may be unable to follow a map and consequently get lost driving to a new location. By Stage 4, he may still be able to find familiar locations, but he may misjudge the distance of an approaching car or be unable to interpret the meaning of a traffic signal, so that his impaired judgment makes him an unsafe driver. (Some would say he is an unsafe driver even in Stage 3.)
In Stage 3, a person with AD may have gone from misplacing her glasses (Stage 2 = all of us!) to misplacing an object of real value, often wedding rings or other jewelry. By Stage 4, she may start to hoard or hide objects for safekeeping, particularly if she is under the delusion that "people are stealing things." Sometimes, however, it may not be a matter of "hiding" as much as simply randomly "putting away" with no memory for where. People who want to try to preserve order usually find that labeling drawers and leaving notes works pretty well in these early stages.

We all lose our train of thought from time to time, particularly if we are under stress or there is a lot going on around us, but by Stage 3 you will have begun to notice in the person word-finding difficulties, particularly for names, that go beyond the expected. By Stage 4, the give and take of normal conversations may be slowed, but if you allow the person with AD to set the pace and scope of the conversation, many can still do quite well.

Next up: More on early stage patterns of progression in AD.