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