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Vision and perception in people with dementia, Part 1

2009-04-23T08:30:00.003-04:00

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

2009-04-13T12:56:00.002-04:00

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

2009-04-07T08:38:00.000-04:00

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

2009-03-30T08:05:00.002-04:00

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

2009-03-24T08:10:00.002-04:00

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

2009-03-21T23:25:00.001-04:00

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

2009-03-18T08:19:00.002-04:00

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

2009-03-15T09:48:00.001-04:00

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

2009-03-12T08:03:00.001-04:00

Patterns of progression in Alzheimer’s disease, Part 3

2009-03-05T07:57:00.001-05:00

Patterns of progression in Alzheimer’s disease, Part 2

2009-02-23T07:59:00.002-05:00

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

2009-02-13T09:14:00.000-05:00

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.

Gift Resources

2008-11-03T08:24:00.020-05:00

Because the holidays are rapidly approaching, this issue is devoted entirely to providing resources and gift ideas for people with dementia. It contains a lot of information I hope you find useful, but it can’t possibly cover everything you need to know.
What I hope it does provide, is a sense of what to look for. Does the person you are caring for need assistive devices, comforting items, or exercises to keep his brain engaged? Are you looking for something that can be adapted and enjoyed by the whole family or something that meets the specific tastes and needs of the person you are caring for? Are you an activity director who needs fresh ideas for a lot of people? This issue will, I hope, give suggestions for all of the above.

One caution: With the exception of The Alzheimer’s Store, don’t concentrate on the Alzheimer’s section of catalogs. We have come a long way in understanding how to engage people with Alzheimer’s disease, but unfortunately, many of the children’s toys I railed against a decade ago are still the chief things being offered in such catalog sections. If you’re not interested in an item, the person with AD isn’t likely to be either. Choose what you have enthusiasm for. I will talk more in future issues about how to introduce new products and activities.

Not so long ago, there were many catalog companies competing for the “activities for seniors” market, and a number of them had special sections for people with Alzheimer’s disease. Now I would say there are seven worth considering. They are:
The Alzheimer’s Store
Attainment
Bi-folkal Productions, Inc.
Eldersong
Flaghouse Activities for Life
Nasco – Senior Activities
S&S Prime Life

Of these, I know the owners of the first four, all of whom are wonderful, caring, committed individuals, who are working hard to “do good” while doing well through their small businesses. The last three are huge catalog companies for whom senior activities is just part of a larger market. They carry many of the same products, and many of ElderSong’s products, since ElderSong produces a lot that is original. All of them have products that work both in the home and in “senior settings” such as day centers and residential care, but only the Alzheimer’s Store is focused specifically on items appropriate for people with dementia, and probably has a bigger family caregiver audience than the others.

Here is a brief critique of each of their catalogs:

The Alzheimer’s Store
http://www.alzstore.com/index.html
800-752-3238
Mark and Ellen Warner began the Alzheimer’s Store 7+ years ago and at the time of this writing, are just about to produce a new catalog. Unlike the other catalogs here, they offer practical assistive devices as well as activity products. One of their most popular items has been a memory phone that allows a person to call someone simply by touching his picture. With nine pictures to choose from, it’s a device any of us might enjoy, but the new catalog offers a simpler version with only three pictures that is likely to be easier for people with dementia to use. As Ellen notes, they are dedicated to enabling people with dementia to stay at home longer, and if they don’t carry a product, they will help callers find it somewhere else.

At the same time, they have many long-term care clients who find unusual and useful activity products there such as the textured, tactile lap pillow, purring kitty, and exercise videos appropriate for the person with AD. You will hear more about some of these things in the months ahead.

The Alzheimer’s Store carries two quality products specifically made for people with AD whose developers I know, and whose commitment I can attest to. Unlock the Memories is a DVD for reminiscence with trivia questions and several levels of clues to the answers. The one for the 1950s seems particularly suited to today’s elders. Front Row Seat is a series of sing-along DVDs that I promoted in the June 2008 newsletter in which the person listening is encouraged to participate as if she had a front row seat.

Also check out Mark and Ellen’s free Alzheimer’s Daily News at http://www.alznews.org/.

Attainment
http://www.attainmentcompany.com/xcart/home.php
800-327-4269Don Bastian started his company 30 years ago with a focus on “helping people with cognitive disabilities succeed at school, work and life.” Although originally aimed at young adults, he eventually realized that his products could also be adapted for older adults, including those with dementia. I first learned about his company through my friend Marge Engelman, PhD, whose Aerobics of the Mind book and Mental Fitness cards he began producing seven or eight years ago. She has gone on to develop other products with him, including Whole Brain Workouts and Thinking Cards. I like all her work, although it must be said that not all can be readily adapted for people with dementia. They are, however, good brain workouts for the rest of us. Their “Aging Resources” catalog is small and manageable.

Bi-folkal Productions, Inc.
http://www.bifolkal.org/
800-568-5357
More than 30 years ago, Lynne Martin Erickson co-founded Bi-folkal Productions which produces comprehensive, multi-sensory reminiscence kits on topics from fashion, farm life, fall, and the fifties to wartime and worklife. There are also “mini-kits” which bring the total topics to about 30. While intended initially for libraries (and they are still widely found there), in more recent years they have been sold in parts that are easy (and less expensive) for both families and professionals to use. A typical kit is likely to contain slides or a CD or DVD, music, skits, trivia, booklets and handouts, props, games, guidebooks – enough material to devote a week’s worth of programming to the topic.

Lynne is not only amazingly thorough in her research (she’s a former librarian herself), but creates with a sense of humor. On life in the 1950s, for example, she included a Good Housekeeping article that described how a wife should greet her husband when he returned from his hard day of work, including taking off his shoes, arranging his pillow, offering a cool drink, keeping the children quiet and never complaining, because “A good wife always knows her place.”

Eldersong
http://www.eldersong.com/
800-397-0533
Beckie Karras is a board-certified music therapist who worked in elder care settings for many years before founding ElderSong in 1985. Her background explains the catalog’s heavy emphasis on musical and reminiscence products. She has written a number of books herself and has published the work of others, and these books appear in numerous other catalogs under the ElderSong brand.

Many of the books call for filling in blanks, singing familiar songs, and reminiscing on everyday topics, all of which either work well with people with dementia or are easily adapted for them. I am especially fond of the You Be the Judge series by Nancy Dezan that takes real court cases and asks participants to choose what the verdict should be, Journey through the 20th Century, Down Memory Lane (2nd edition), and Remembering Our Town, all of which are fun for the well elderly, too. It’s no surprise that Beckie’s musical selections are also carefully chosen.

Dover Publications
http://store.doverpublications.com/
Before moving on to the large catalogs, I want to mention the Dover specialty books. Dover is a company with products I like and a customer service policy I find frustrating because there is no way to reach them by phone unless you send a fax. Their free “Antiques and Architecture” catalog has many books I recommend, all at a reasonable price, but you must scroll to the bottom of the Dover website page to order it.

Here are some of the books they publish that are great for reminiscing with people with AD:
· Their “Everyday Fashions” series feature excerpts from Sears catalogs and are grouped by decades, 1920s through the 60s. For today’s older adults, the 40s and 50s are most likely to be relevant.

· For the men who are fascinated with transportation, there are books on trains, planes, cars and ships.
· If you happen to be from New York City, there are half a dozen books of old photographs.
· There are also loads of books featuring photographs and floor plans of various styles of houses in various time periods which are super for drawing out memories of home life. Among my favorites are 101 Classic Homes of the Twenties and 100 Small Houses of the Thirties.

Flaghouse Activities for Life
http://www.flaghouse.com/default.asp?Category=Activities%20for%20Life
800-793-7900

Nasco – Senior Activities
http://www.enasco.com/
800-558-9595

S&S Prime Life
http://www.ssww.com/therapy-and-rehab/
800-243-9232

These three catalogs undoubtedly see themselves as distinctive and would not want me to group them together, but they are all aimed at activity directors and have a lot of overlap.
· S&S has long been known for its craft products and their “Prime Life” catalog, aimed at seniors, still has more than 200 pages of crafts. However, they also have categories like Alzheimer’s resources, trivia and reminiscing, movement therapy and music therapy, among others.
· Flaghouse focused exclusively on the developmentally disabled and rehab populations for many years, until the 1990s when they became THE place to go for Snoezlin (sensory stimulation) equipment. At the time I found them gimmicky and overpriced, but they have since gotten a better sense of the market, and I like them a whole lot better.
· Nasco has been the most consistent in offering a wide range of products for older adults. Their “Senior Activities” catalog features many products from Attainment, Bi-folkal, Dover, ElderSong and ElderGames, the last of which produced a bunch of trivia and reminiscence booklets/print materials in the late 1980s which are still selling well.

Some specific products

What specifically do I like? Here are a few ideas:
· Both Nasco and S&S have a variety of large-piece puzzles with adult-appropriate pictures, some with as few as 12 pieces.
· S&S also has a number of products to encourage movement in amusing ways such as animal-shaped vinyl bean bags, foam hand paddles that can be used with balloons and other light-weight balls, and softly floating juggling scarves that make exercise colorful and gentle.
· Nasco has a fascinating product with the completely uninteresting name of “Rechargeable 3 Balls with Adapter,” that I have seen used as a wonderful distracter, calmer. The balls, each about 3+ inches in diameter, change to varying pretty pastel colors before your eyes, and can be tossed, rolled and squeezed. I have been critical at times in the past about Snoezlin (sensory stimulation) rooms because they are expensive, labor intensive and under-used, but these glowing balls can be used both as a sensory stimulator or calming tool in a group or a person’s own room – a much simpler solution for agitation.
· Flaghouse has a pedal exerciser that can be placed in front of a seated person’s chair so that he can exercise his legs while watching TV or watching the birds outside the window. This is a simple tool for increasing physical activity that is not always easy to find in a day of elaborate equipment.
· All seven of the stores we have mentioned have videotapes and DVDs, but Nasco seems to have the most wide-ranging collection. I am a big believer in getting people to laugh, so I am particularly fond of Reader’s Digest Legends of Comedy Video Series, The Best of Minnie Pearl Video, The Lucy Show Video Set, and the Jack Benny Show DVD Set.
· I would also recommend the Johnny Carson videos or DVDs, which I haven’t seen in these catalogs but are widely available online. Here’s one source: http://www.asseenontv.com/prod-pages/johnny_carson_DVD.html?gid. Many of today’s elders went to bed for 20+ years with a smile on their faces because of Johnny Carson. For many people with AD, who find that current late-night comics are on too late and are too loud, brash, and fast-paced, being able to watch Johnny Carson again anytime they wished would be a delight.

Many products intended for a wide range of consumers can be easily adapted for people with dementia. Blokus, for example, is a strategy game available from S&S and found in many toy stores that is “played” by people with dementia by simply manipulating the plastic tiles that slip easily into place across the board to make colorful designs. Similarly, Connect Four, also available from S&S, will not succeed if you play to win, but many people with AD seem to enjoy dropping the poker chip-like pieces into the slots.

Based on their experiences as leaders in an adult day center, Joan Wheeler and Peggy Shelley began their company, Shake Loose a Memory (http://shakelooseamemory.com/productsslam.html) in the mid-1990s with one product with that name, and have since added a half dozen more. Their core philosophy is "When people play our games, they feel good about themselves!" All of the games, with the exception of Category Flip, which is about arranging cards in categories, are based on the idea of rolling a die and choosing a card with a matching number of dots on the back. Shake Loose a Memory uses everyday experiences such as planting a garden to jump start reminiscences. All were designed specifically for people with memory impairment but most also work well intergenerationally.

S&S carries Shake Loose a Memory, but not Shake Out the Truth, which is my favorite. Everyone in the group gets a card with “YES” on one side and “NO’ on the other. One person rolls the die, chooses a card and reads it aloud. Everyone in the group guesses whether the statement is true for that person, and when they have all voted yes or no, the person who rolled the die reveals the truth. Most of the questions are innocuous – I have a summer birthday, I had a job while going to high school – but some are more provocative: I have won money gambling, I have given a horse a bath, I have eaten a raw egg. Discussion is easily stimulated among all players with such memories.

One quick tip: For any game that requires dice, I usually substitute the 2-1/2 X 2-1/2-inch foam dice available from Oriental Trading which are $8.99 per dozen (http://www.orientaltrading.com/, Item # IN-39/198) because they are easier for arthritic hands to handle and aging eyes to see. For more realistic over-sized dice, The Alzheimer’s Store has their own version.

Bucky Pillow and other comforts
One thing that has always disturbed me in residential care settings is seeing a person who has fallen asleep in his wheelchair or on a couch with his head fallen to the back or side in a strained position that will certainly ache when he awakens. When I discovered Bucky Pillows a decade ago, I liked them immediately because they were filled with highly malleable buckwheat hulls that meant they could be shaken to provide support where it was most needed. Unlike neck pillows that are bulbous affairs inflated like a toddler’s swim ring, Bucky Pillows could be adjusted so that they provided support for the head that falls to one side, or the elbow or back that needs a little something tucked beneath or behind it.

In the intervening years, Bucky has broadened its range of comforting products and now offers neck rests, pillows and masks in varying covers that can be heated, cooled and machine-washed. Order a charcoal Bucky pillow now by clicking here, or a lavender one by clicking here. More details at http://www.bucky.com/catalog/controller.php?pg=welcome.

One of the things I worry most about with people who have advanced dementia, especially in winter, is that they will be cold and unable to tell anyone directly. If someone’s hands or feet are cold to the touch, that person is cold, and probably needs a shawl, sweater, gloves, an old-fashioned muff, long pants, knee socks, slippers, a hat, a blanket or all of the above even when indoors! There is a reason that people long ago slept with nightcaps and heated their sheets with warm bricks. Even in Florida where we don’t set our thermostats any higher than northerners do, I spend much of the winter with a cloth-covered corn-filled bag that I have heated in the microwave on my lap or behind my back. A cold person is an uncomfortable person who may show his discomfort with pacing, agitation or crabbiness. A simple warm-up can work wonders.

In some cases, people with dementia are also comforted by dolls or stuffed animals. I don’t specifically promote such items, but I have seen the joy they can bring, and would never consider depriving anyone who wants one. (The Alzheimer’s Store owners have had highly positive feedback from the dolls they carry.) Many people are also soothed by music (especially when listened to through earphones that shut out distracting noises) or by DVDs of nature scenes, puppies and baby faces, all of which have been designed to calm. These are all readily available through the catalogs mentioned above.

My products

I have long crusaded for interesting and adult games for adults, and have limited supplies of four wooden items that I had personally designed in Thailand. All four, however, work well with people of all ages, including children.

Stir-it-up Marimba and Slapping Slats
These rhythm instruments are based on American models and take advantage of the natural remaining abilities of people with AD.

The Stir-it-up Marimba is a cylindrical drum that is held in the palm of one hand and stirred with the other hand using the drumstick, as if one were stirring a cake mix in a bowl. Obviously each slat on the cylinder can be individually struck to make its own note, but when stirred, produces a sound something like an old-fashioned coffee pot percolating. It is made of monkey wood, chosen for its resonating properties, and all of the edges have been rounded so that it is comforting to hold.

The slapping slats are much simpler: one end is held in each hand and the rhythmic sound is created by rocking your hands back and forth.

Cube puzzle and square puzzle
Both of these are common toys in Thailand, but I had them specially adapted because I knew that wood is intrinsically pleasant to hold and manipulate, as long as there are no sharp edges. Therefore, all the pieces have rounded edges so that they fit comfortably in the hands. Both pieces also come with instructions for solving, and as real puzzles, are a challenge for any age. However, my goal was to provide a challenge for the person who wants a real brain exercise and to provide pleasing wooden pieces to hold or rearrange into patterns or sculptures for the person who has AD.

The cube puzzle is about 4 inches on each side with a base and a top that fits neatly over the puzzle when it is put together correctly.

The square puzzle has its own wooden case, and on the inside bottom of the case one solution to the puzzle is painted so that if one is in a hurry to solve it or clean-up, it’s easy to do so. However, we provide a simple sheet of white paper to place over the painted solution so that it becomes a real challenge again, and so that an elderly person can see the individual pieces more easily in the box.

Supplies are limited. Prices do not include shipping.
Stir-it-up Marimba, $20 Slapping slate, $10
Cube puzzle, $12 Square puzzle, $28.
To order and of these items, click here.

Standard shipping is $10 for the square puzzle, due to its weight, and $6.95 for each of the others when ordered individually. Add $1.50 for each additional item. Add $2.50 for each additional square puzzle.

Surely that’s enough for now!

Wiser Now Products

Alzheimer’s Basic Caregiving – an ABC Guide and Activities of Daily Living – an ADL Guide for Alzheimer’s Care provide essential information for any family or professional caregiver for just $7.95 each or $15/set. (The books are available at reduced prices in quantity.) This newsletter, Wiser Now Alzheimer’s Disease Caregiver Tips, which covers topics the books don’t, is just $18 for a yearly subscription, also with group discounts available. Order all of these items at http://www.wisernowalz.com/. Wiser Now, Inc. also publishes Brain Aerobics Weekly. See a sample or place an order at http://www.brainaerobicsweekly.com/.
All of the above and more (including our free weekly Just a Bite digest) can also be found at our main website: http://www.wisernow.com/.

Contact Kathy@wisernow.com or call 800-999-0795 (9-5 Eastern time) to place an order today!

Driving and Dementia, Part 1.

2008-08-05T09:11:00.002-04:00

The August issue of Wiser Now Alzheimer’s Disease Caregiver Tips covers Part 1 of the topic of driving and dementia. (What makes people with Alzheimer’s disease unsafe drivers?) As we age, our reaction time slows, our ability to refocus our eyes quickly between close and distant objects diminishes, and we often experience other physical changes that can affect our driving skills.

When people have dementia, they develop a whole new group of much more serious problems that cause them to make mistakes such as these:
•Getting lost going to familiar places
•Stopping in traffic for no apparent reason
•Failure to stop at a stop sign or red light
•Confusing the gas and brake pedals
•Driving at inappropriate speeds (often too slow)
•Moving into the wrong lane and difficulty maintaining lane position
•Easily flustered and distracted while driving
•Poor judgment when making left hand turns
•Hitting curbs

Often their vision is adequate to pass the mandatory vision exam when they are retested, but that short test fails to distinguish the difference between vision and perception. A person with dementia, for example, may see a caution sign but not be able to interpret its meaning, or may see a car approaching as he makes a left hand turn, but not be able to judge its distance and speed.

What is perhaps most dangerous of all is that they lack insight into their difficulties and frequently defend their abilities by saying, “I just have to be careful.”

The deficits are real, but the solutions are complex and often lacking. For example, a person who can no longer drive safely often can no longer manage public transportation safely either, and that’s assuming there is even public transportation available.

Read more about this issue by signing up for Wiser Now Alzheimer’s Disease Caregiver Tips and adding your comments to the debate.

Should I travel with my loved one with dementia?

2008-07-13T09:50:00.004-04:00

Here is an edited excerpt from the latest issue of Wiser Now Alzheimer’s Disease Caregiver Tips that focuses on traveling with and without your loved one:

Many years ago I had an offbeat friend from Michigan of Czechoslovakian heritage whose sister married a Texan. At the wedding reception, all the northern guests were taught country line dancing as a way of introducing them to the southern culture and welcoming them into the family. My friend felt that courtesy called for an equal gesture on her family’s part, so she gathered them together, and on the spot made up a Czech folk dance which they dubbed the “Klotzky,” whose chief feature was “a jump step” and flailing arms. It was an immediate success, and I am told is now featured at all family gatherings. If your family is equally spontaneous, consider taking your family member with dementia anywhere you want to go.

Families who have more in common with Auntie Mame than Amy Vanderbilt, who delight in the possibility that anything might happen and can always be counted on to go with the flow are likely to put your loved one with Alzheimer’s disease at ease at many events. The challenge with graduations, weddings, high school reunions, vacations and family reunions is that your loved one is likely to encounter many unfamiliar people, places and situations that your understanding family members may not be able to protect him from.

Before embarking on a trip across time zones or state lines, ask yourself, in what ways will my loved one or others benefit by taking this trip? If your first grandchild is getting married, for example, and your loved one has long been close to his granddaughter, the extra effort required in making the trip may be worth it for everyone involved.

At the same time, set realistic expectations. If your granddaughter wants her grandfather at her wedding, but hasn’t seen him in a year and your gut feeling tells you that he will be more upset than pleased by the event, go with what will be best for his well-being. Will your loved one with dementia be comfortable in this out-of-the-ordinary setting, or will he be frightened by the crowds, bored by the ceremony, and quickly fatigued by the unaccustomed hullabaloo?

Think of your own ease as well. Are you worried that he might speak his mind at inopportune times, that you will have to constantly look out for him in order to protect him from others who are unaware of his limitations, and that in so doing you won’t enjoy the event yourself?

Think of your granddaughter, too. The focus should be on the people getting married, not on your loved one. If you, he or they would ultimately be more comfortable if he were not there, make arrangements for him to stay behind. If you think he could handle the wedding but not the reception, make arrangements for him to attend only what is most appropriate, and be ready to revise your plans as needed if you guessed wrong.

Not everyone lives in a wild and crazy Auntie Mame-style family, and that’s fine. When considering whether or not to take your loved one with dementia to a family affair, weigh what’s fair for all involved.

To subscribe to Wiser Now Alzheimer’s Disease Caregiver Tips, click here.

Resources for Alzheimer’s caregivers

2008-06-12T09:46:00.003-04:00

One of the pure joys of working in a field like aging is becoming connected to a network of amazing people doing phenomenal work. Following is a brief list of resources and people (many of them friends) I admire and have learned from. I will be adding more over time, but there are already more in my books and products, and the website http://www.wisernow.com/.

The Alzheimer’s Store (http://www.alzstore.com/) is an outgrowth of architect Mark Warner’s comprehensive book, The Complete Guide to Alzheimer's Proofing Your Home. Through the store, he and his dedicated wife Ellen offer a wide variety of assistive devices, print resources and activity products. Mark has also written another book on safeguarding people with dementia who have a tendency to walk away from home, he produces the free Alzheimer's Daily News (http://www.alznews.org/) and he speaks and consults through his company Ageless Design, (http://www.agelessdesign.com/).

To order The Complete Guide to Alzheimer's Proofing Your Home, click here.

Virginia Bell and David Troxel are the wonderful authors of a growing and enduring series of books which began with The Best Friends Approach to Alzheimer's Care in 1996. They are also delightful speakers and consultants. Check out their website at http://www.bestfriendsapproach.com/ or contact David directly at bestfriendsdavid@aol.com.

To order The Best Friends Approach to Alzheimer’s Care, click here.
To order The Best Friends Staff: Building a Culture of Care in Alzheimer’s Programs, click here.
To order The Best Friends Book of Alzheimer’s Activities, Vol. 1, click here.
To order The Best Friends Book of Alzheimer’s Activities, Vol. 2, click here.

Elizabeth C. (Betsy) Brawley is the author of two terrific books on environmental design for older adults: Designing for Alzheimer's Disease: Strategies for Creating Better Care Environments and Design Innovations for Aging and Alzheimer's. She is also an extremely knowledgeable consultant. You can reach her at Design Concepts Unlimited (Sausalito, CA) by calling 415-332-8382 or emailing her at betsybrawley@att.net.

To order Design Innovations for Aging and Alzheimer’s, © 2006, click here.
To order Designing for Alzheimer’s Disease, Strategies for Creating Better Care Environments, © 1997.To order click here.

Dan Kuhn, currently the education director for the Greater Illinois chapter of the Alzheimer’s Association, is the author of Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers, a terrific resource written with compassion and insight. Dan.Kuhn@alz.org.To order, click here.

Dorothy Seman has always been my moral compass in terms of how to treat people with dementia with dignity and the highest respect for both who they once were and still are. She is a co-author of Rethinking Alzheimer’s Care. Never miss an opportunity to read her work or hear her speak. Dorothy.Seman@med.va.gov. To order, click here.

Carol Sifton’s latest book is Navigating the Alzheimer's Journey: A Compass for Care-Giving. Like her previous book, it is both thorough (652 pages) and compassionate, filled with stories of real experiences with real people, and well-considered advice. Carol is also available for training and consulting. Call her at 902-634-3904 or email her at csifton@ns.sympatico.ca.

Joyce Simard is the author of The End-of-Life Namaste Care Program for People with Dementia. She chose the word “Namaste” because it means, “I honor the spirit within you,” which clearly suggests the compassion with which she approaches the dying process. However, Joyce is primarily a high-energy person with a laugh that tends to burst out easily. Therefore, her second book, The Magic Tape Recorder, was written as “Grandma Joyce” for children to explain how they can be helpful to people with dementia and other disabilities. With its delightful, full-color illustrations, it is probably a closer reflection of her personality. You can reach her at http://www.grandmajoyce.com/ or http://www.joycesimard.com/.

To order The End-of-Life Namaste Care Program, click here.
To order The Magic Tape Recorder, click here.

Karen Stobbe has long experience in the theatre and that has made her one of the most engaging and creative (read “fun”) Alzheimer’s trainers I know. Plus, she freely shares her ideas at http://www.in-themoment.com/. She is also the author of the short book, Sometimes Ya Gotta Laugh, in which she provides insights and advice gleaned from her father’s journey through Alzheimer’s disease. Contact her at karenstobbe@charter.net and enjoy.

Jitka Zgola is a woman of far-ranging talents (occupational therapist, inn-keeper, potter, to name just three) who has written several books, of which the most enduringly popular is Care That Works: A Relationship Approach to Persons with Dementia. It combines innovative, yet practical ideas with Jitka's whimsical art work. She can be reached at giverny@ns.sympatico.ca or by calling 902-928-2399. And check out her Nova Scotia Bed & Breakfast, pottery and other artwork at http://.singingpebbles.ca/. To order Care That Works, © 1999, click here.

Alzheimer’s disease and group singing

2008-06-12T09:07:00.002-04:00

Barbara Jacobs is the creator of the video/CD series, “Front Row Seat” (http://www.frontrowseatvideos.com/) specifically designed for people with Alzheimer’s disease. Her formula for success working with people with AD is to lead a music class, not just a sing-along. She begins with a reminiscing warm-up activity, bringing in a CD, for example, of Nat King Cole or Judy Garland. After playing a song or two, she provides some brief information on the artist’s life (easily found on the CD cover or the Internet), and then encourages participants to share their memories and knowledge. The singing follows, helped along by large print copies of the lyrics, for those who want them.

There are many other ways to enliven group singing. Barb, as demonstrated on her CDs, adds such things as dancing, blowing bubbles and children to the mix. Another idea is to change the words. For example, the song “My Favorite Things” from “Sound of Music,” has been re-written in an aging version that includes these lines:
When the pipes leak,
When the bones creak,
When the knees go bad,
I simply remember my favorite things,
And then I don't feel so bad.

Parodies are fun to sing (and create), but a simpler way to change the words is simply to change the nouns. For example, change the:

Flowers in “When You Wore a Tulip, and I Wore a Big Red Rose" (lilac and daffodil?)
Ethnicity in “My Wild Irish Rose” (Mexican?)
Name in any song that uses one, such as “I’m in Love with Amy,” (why not Nancy or Susie?) or “I’m Just Wild About Harry” (Why not Johnny or Jimmy?)
Colors in any song that includes them (Why not red suede shoes, purple rose of Texas or blue cliffs of Dover?)

All of these ideas can also be used to start a reminiscence discussion on a musical theme, too. For example:

Talk about colors participants like by singing songs like "The Little Brown Jug," "When the Red, Red Robin," and "By the Light of the Silvery Moon."
Talk about the funny things you did when you were younger by beginning with silly songs: "The Flat Foot Floogie," "Mairzy Doats," and "Barney Google."
Talk about names you like or how you were named by singing "Sweet Adeline," "My Bonnie Lies Over the Ocean" "Alexander’s Ragtime Band," and "When Johnny Comes Marching Home."
Discuss your courting days and sing, "Love and Marriage," "I Want a Girl," "Let Me Call You Sweetheart," "Makin' Whoopee," and "Get Me to the Church on Time."

There are dozens more songs in each of these categories and dozens more categories that will stir up memories and start the toes tapping. One resource for ideas and trivia games with song titles is ElderSong’s “Say it with Music.” (http://www.eldersong.com/StoreFront.bok)

You can intersperse singing with discussion as Barb Jacobs recommends, whenever you need a change of pace. People with AD tend to be good at filling in the blanks when you say the beginning of a line or title to a song, such as:

Hail, Hail . . . The Gang’s All Here
I Wonder Who's . . . Kissing Her Now
In the Good Old . . . Summertime
Let Me Call . . . You Sweetheart
You Must Have Been . . . a Beautiful Baby

You can also ask opinion questions about music: Do you like Big Band music? Do you enjoy close harmony singing like barbershop quartets or the Andrews sisters?

By Kathy Laurenhue, excerpted from Wiser Now Alzheimer’s Disease Caregiver Tips, (June 2008, Vol.9 Issue 5). Available from www.wisernowalz.com or www.wisernow.com.

Advice to caregivers: Judgment, Part 1: Don’t expend precious energy judging yourself.

2008-06-06T11:42:00.003-04:00

Jack Paar once said, “Looking back, my life seems like one long obstacle race, with me as its chief obstacle.” Like him, many of us are our own worst enemies berating ourselves for our real or imagined mistakes that have been compounding since the days when we were students writing essays:

In biology today, we digested a frog.
A molecule is so small that it can’t be seen by the naked observer.
Our biology class went out to explore the swamp and to collect little orgasms.

We all make mistakes. Yet happiness and self-esteem must come from within, from accepting ourselves as we are. Remember that if you worry what people think of you, it means you have more confidence in their opinions than your own.

Avoid these self-criticisms:
Mind-reading. Last week I borrowed a colleague’s office to make a phone call. When she walked in on me, she gave me a withering look. Thinking I was reading her mind, I started to apologize for invading her space. Instead she told me she was late coming in because she had just been through “banking hell.” Blaming ourselves for others’ discomfort is usually ridiculously self-centered.

Viewing a negative event as a never-ending pattern. Just because your loved one has fought attending day care for three weeks straight does not mean she will never adjust or that you were wrong to send her there. Many a person has left the dock just before his ship came in.

Fortune-telling. “Getting him to bed tonight is going to be a disaster.” If you’re going to predict the future, at least make it positive. If you cannot help worrying, remember that worrying cannot help you either.

Perhaps the most important key to taking yourself lightly is to move on. Charlie Brown once said, “I’m still hoping yesterday will get better.” It’s amazing how many of us keep trying to improve the past, when we can’t even count on doing well in the present. As Josh Billings noted, “Experience increases our wisdom, but it doesn’t reduce our follies.”

The toughest kind of mountain climbing is getting out of a rut.

(Excerpted from Wiser Now Alzheimer’s Disease Caregiver Tips)

A message to caregivers

2008-06-04T14:45:00.000-04:00

A few years ago, my daughter and I had the tremendous experience of riding mules deep into the Grand Canyon from the North Rim. The mule team leader, easily seeing my inexperience, assigned me to a mule named Maude, a gentle creature who chose her own pace. She was particularly immune to prodding on the return, uphill trip, and I soon stopped caring that I was causing the last three mules to lag behind. But that’s when I also learned she had been misnamed. To put this as delicately as possible, she ought to have been named Tooter. She was not in the least discreet – indeed, there were times when she sounded like a trumpet in a John Phillips Sousa marching band. The mule path was also shared by hikers, and she startled quite a few of the adults. Children found her hilarious, of course. (Frankly, so did I.) One hiker thought she might be pregnant. She was momentarily quiet as we passed, so I didn’t enlighten him to the true cause of her distended belly. However, when we finally returned to the stables, she gave a whole new meaning to “running out of gas.”

The young woman on the mule behind mine showed infinite patience (but tended to keep her distance) at one point saying, “Whatever gets her up the hill.” The life of a caregiver is often stressful. Any caregiving book worth its salt will admonish caregivers to take good care of themselves: eat a balanced diet, get enough sleep, exercise regularly, surround yourself with cheerful friends and keep a positive attitude. But the reality is that sometimes caregiving is a steep journey with a heavy load. Sometimes the unhealthy comfort food or the foregone exercise class is what gets us up the day’s hill. Remember Maude, set your own pace, and make no excuses.

(Excerpted from Kathy Laurenhue’s Alzheimer’s Basic Caregiving – an ABC Guide)

A chance to talk...

2008-05-12T22:41:00.003-04:00

At a conference in New Orleans last week, I had the great privilege of moderating a panel of people with Alzheimer’s disease as they talked about what it’s like to live with this debilitating condition. Even the gentleman whose word-finding difficulties were quite advanced and frustrating for him (He had been an economics professor) was amazingly eloquent as he described how he managed to find a way around the words he could no longer conjure up. All of the panelists described the importance of maintaining a sense of humor. They heartily agreed with what Kurt Vonnegut once said,

“Laughter and tears are both responses to frustration and exhaustion.
I myself prefer to laugh,
since there is less cleaning up to do afterward.”

At the end, the panelists received a well-deserved standing ovation. If you are planning a conference at which dementia is a topic, my advice for the most moving and enlightening presentation possible is to give people who have Alzheimer’s disease a chance to talk for themselves. (For tips on how to prepare the participants, contact mailto:kathy@wisernow.com )