Lewy Body Dementia and other Dementias may be right in front of you.
It was for me. I saw them as "signs of aging".
We don't talk openly as a society about aging because we've provided so many stigmas about the process and the results.
Everywhere you look women and men are told to focus on their outward appearance. At work, they see the need to continually improve skillsets. There's never enough time in a day to achieve and to reach for what we're told we should want, need and have.
We're on a constant merry-go-round reaching for the gold ring.
It's not surprising we're oblivious to Dementia until it comes directly into our lives. Even then, it has to come into our "face" before we notice and many still don't reach out, try to manage and try to intercede.
Here are some signs of Dementia in process. They're not always there and they're not always a definite "signpost" but they should be seen as discussion points with your loved one and with a medical specialist.
They're from the website www.dementia.com
(such as a cane or walker)
. Usually, families will note that the person walks more slowly. After a while they will commonly describe the person's walking as being "uncoordinated". These aren't bad descriptions, but they are not what doctors say, because we tend to think about symptoms and signs of dementia
disease) in terms of which part of the brain is affected.
When it comes to problems with walking in dementia, unless it is due to a stroke
paralysis that gives rise to
, or other less common, specific, local causes, doctors tend to approach the problem by considering two types of problems. One has to do with slowing, and the other with how the brain integrates all the information that is needed for precise movement.
. Parkinson's disease affects movement in many ways, but traditionally these are grouped under four headings: tremor (a rhythmic form of shaking); slowness of movement (the fancy term is bradykinesia)
stiffness (the technical term that doctors use is rigidity; we use it to distinguish it from the stiffness seen with a stroke, which is called spaticity) and the tendency to fall (we call a fall a fall, but we call the tendency to fall postural instability).
gait problem for a person with dementia is slowing, as an aspect of parkinsonism. Other signs of parkinsonism that have to do with walking are that the steps shorten, the posture becomes stooped, the space between the feet (so-called "base of the
The second type of problem overlaps a little with the first, and is commonly described by families as the person they care for being "uncoordinated". (The technical term that doctors use for this is "apraxia"; we use "uncoordinated to mean a problem with a structure at the back of the brain called the cerebellum. And of course, when we really start in on talking about incoordination, we quickly switch over to another term, called ataxia.") narrows, and there is less arm swing. When the person turns, they no longer pivot on their heels, but instead turn in a series of short steps. During the turns, their balance can become unstable; they are especially likely to fall backwards. Another related problem is that the person can seem to freeze in place when they walk through a door frame.
Even so, it makes me hesitate to use the term "incoordination" when what I mean is apraxia, not ataxia. What families typically see in the person who is having trouble walking that goes beyond simple slowing and parkinsonism is that the person with dementia first has problems starting to walk. The starting to walk (the technical term is "gait ignition" can be part of parkinsonism, or a sign of apraxia. Either way, sometimes 'sensory tricks' can help.
Very early in the course of apraxic walking in dementia, a cane or a walker can help. It is common to see a person go from a slow, cautious gait, to an almost normal walking pattern simply by taking up a cane. In fact, I have often seen the cane work when the person holds it in their hand, without the can actually touching the floor.
Later, however, a more common picture is the person with dementia requiring physical "hands on", such as touching by another person to start walking or to rise out of a chair. When the problem is first one of getting started, families often comment that the person they care for does not need anything more than a touch to get out of the chair, but can't seem to get out of the chair without it.
There are types of problems with starting walking (with gait ignition disorders) that respond to a variety of what is known by the trade as "sensory tricks". For example, vigorously stroking the leg that you want the person to start moving, or seeing if they can lift their feet up and down to march in place, or seeing if they can step over something to start - a line, or sometimes you can put one foot in front of theirs and ask them to step over it. Many people who have been in the armed services will respond to the command "quick march" spoken softly into their ear. Frustratingly, although some tricks often work, none of them work all the time.
It is also important to remember that people with dementia can have problems with walking that are not due to the dementia itself. Exhaustion can limit how far a person can walk, as can pain. Sometimes pain can reflect an unattended problem in foot care. Usually, a doctor or physiotherapist
can tell just by looking at how someone walks, whether the problem is neurological or due to pain, and if due to pain, whether it is a problem of the hip, the knee, or the ankle/foot.
Walks more slowly
Walks with a narrow base
Cannot start walking
Parkinsonism or apraxia
Cannot continue walking/ can only walk short distances
Exhaustion, pain or apraxia
Freezes in the door frame
A classic sign of parkinsonism
Walks with a limp
Pain in the hip, knee, ankle or foot; stroke
For all the different types of problems, there are only just a few treatments. Sometimes a physiotherapist can help, especially if a walking aid
is going to be used for the first time. A physiotherapist can also help by showing exercises that can strengthen muscles, especially those around the hip, which help prevent falling. Many people with dementia can still learn to do simple repetitive exercises, and get some enjoyment from it. Physiotherapists who work with dementia patients commonly observe that as the person exercises more, they exercise better, and often seem more engaged. Families commonly notice this too.
It is controversial whether treatment for Parkinson's disease works for people who have parkinsonism in dementia. Some things are clear. If the parkinsonism is due to or made worse by medications (especially neuroleptic
or antipsychotic medications) these need to be used in the lowest possible doses, or even discontinued if that is possible. It is also clear that the motor parkinsonism of Parkinson's Disease Dementia should be treated.
In Parkinson's disease, some drugs work by lowering the amount of the brain chemical
) acetylcholine. These drugs must be avoided in people with dementia. Most drugs, however, work by increasing the amount of the brain chemical (neurotransmitter) dopamine
. If a dopamine preparation is to be used, this needs to be done with great care, as a side effect
can be hallucinations or delusions. This dilemma arises most often in Lewy Body dementia where the parkinsonism is most classically like Parkinson's Disease, but where hallucinations can be a very difficult problem.
Sometimes, in people with Alzheimer's disease
, mobility problems due to apraxia can improve by treatment with a cholinesterase inhibitor
(the first-line drugs for treating Alzheimer's disease). In the days when cholinesterase inhibitors were first being used, I saw this many times, because it was common to see people with moderate dementia who had never been treated. Now that treatment is so widespread, I see it less often. Where I now see it most is when patients who have been on one cholinesterase inhibitor are switched from that to another, or sometimes when memantine
As the person you care for becomes more and more immobile, they might no longer be able to walk. Sometimes this comes on suddenly, after an acute incident
illness that has required the person to be in hospital. mobility can be lost quickly on that setting, and sometimes it is very difficult for rehabilitation to occur. Problems with mobility are a common reason for a person with dementia to be moved to a nursing home. Care for a person with dementia who is immobile enough to be bedfast is very difficult. Many other problems go with it, including constipation
and blood clots. Pneumonia
occurs more often. Pressure sores
can also be seen, and even tough larger pressure ulcers
present as failure of care, smaller ones can develop quickly and insidiously, especially in people whose circulation is poor.For most people with dementia, being bedfast signals the terminal phase. In that phase, it is appropriate to consider palliative
Other notes on mobility impairment
Mobility impairment occurs more often in some types of dementia than in others. People with Frontotemporal dementia
can show rigidity of movement as the dementia progresses. It is characteristic of Lewy Body dementia, Parkinson's disease dementia, and a group of dementias associated with so-called "parkinson-plus" disorders, such as multiple systems atrophy
supranuclear palsy and a related disorder called corticobasal degeneration
(CBD). Frontotemporal dementia sometimes is accompanied by Amyotrophic lateral Sclerous (ALS), so that immobility occurs early in the course of their illness.
One of the most active areas of research amongst people who study how the brain controls movement is that sometimes mild parkinsonism - usually mild slowing - can be the very first sign that a dementia might be starting. Slow movement can preceed other signs for up to five years. The area is challenging however, because as people age, many slow down for a variety of reasons, and not everyone who is slow gets dementia. Even amongst people with parkinsonism, it only increases the risk. It does not mean that dementia is inevitable. The hope amongst people who are doing this research is that if it is an early sign of dementia, it can be treated in some way so that the dementia can be prevented. Several groups are actively engaged in this research worldwide. One respected researcher whose work can be looked at is Richard Camicioli at the University of Alberta."
Hope these notes help someone. Wish I'd had more guidance and more truly compassionate direction. Unfortunately, too few people are out there and not enough direction to show us the path and the way that will make our journey and our loved one's journey a little easier.
If you're journeying with someone who has Dementia of any kind please know that you are appreciated and valued even if the person can no longer realize what you are doing or believes what you are doing isn't helpful.Your care and concern are invaluable.
Know you are appreciated and know you are greatly valued.