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Did you ever notice that when someone in the early or middle stages of dementia approaches a chair, they sometimes turn “the long way around” before sitting?

Imagine approaching a chair on your left side.  Since your left hip reaches the chair first, it makes sense to most of us to sit down leading with the left side. 

I’ve seen this phenomena in about 50% of my Alzheimer’s patients, and 100% of my Parkinson’s patients- instead of continuing with the left hip leading to sit, the person turns back in toward the chair with the opposite side, turning a full 360′ to lead with the opposite hip.

There is something interesting at play here.  What seems automatic to us and our refined movement patterns is not an intuitive movement in a neurodegenerative brain.

So what is the corrective course of action?  Teach the person how to lead with the closest hip?  Or make modifications to the environment to make “long way around” safer?

The answer is yes.  And yes.

I’ve had some success putting tape on the floor in order to provide a visual cue for proper foot placement.  With consistent repetition (for at least 3 weeks), this new strategy can take hold and become the normal way to approach that particular chair.

But strategies like that do not carryover to other chairs… or the bed… or the toilet… or the sofa.  So then modifying the environment with grab bars, super poles, and bed handles become the best strategy for ensuring a safe sit to all surfaces.

Technical terms for this phenomena may include motor apraxia, perceptual-motor deficits, and/or motor planning dysfunction. What it really means, though, is that a more primitive movement pattern- one we learned when we were creeping around while holding onto furniture and always facing the object we were holding on to- is no longer being overridden by more recently learned movement and balance patterns when we could let go and have nothing but wide open spaces in front of us.

What interesting movement patterns have you observed in someone with a neurodegenerative disease?

My thoughts today pertain to the nebulous world of family dynamics. Although no two families are the same, there are plenty of similarities worth discussing when it comes to the burden of caregiving for someone with dementia.  Among family members there never seems to be an equal distribution of work, or interest, or investment related to the progressive demands of dementia care.  This leads to disharmony among siblings and spouses, children and parents.  I see it time and again in the most functional of families- from the earliest seed of resentment to full-blown family feuds- caring for someone with dementia changes things.

Idealistically speaking, dementia caregiving should be a team effort. However, the team approach is inherently flawed due to factors like geography, employment, financial resources, and other obligations.  Frequently the care of an older adult with dementia falls primarily on one adult child.  This is the child who lives closest, or who has the most accessible house, or who has the most “free” time- it is a decision born out of necessity and default.  And while other family members initially pledge support and appreciation, the best of intentions inevitably dwindle over time.

I want to give a shout out to the full time caregiver.  I am in awe of you and your dedication- although I am sure you would trade the accolades and applause for an extended break from the madness. And to the spouses, the siblings, and the other relatives of the caregiver, I encourage you to help however you can.  I know that conflict sometimes exists in the way the care is provided or the decisions that are made, but the truth is that the full time caregiver needs help, recognition, and support.  Express gratitude regularly.  Offer to help however you can.   Buy some groceries or run a few errands.  Little things will make a big difference along this long and difficult road.

Related articles

• A Dementia Prayer (allthingsdementia.com)
• Friends don’t forget friends dealing with Alzheimer’s (mayoclinic.com)

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When you look at the big picture in Alzheimer’s disease, and visualize the steady decline of every functional ability, sometimes you need to appreciate the smaller successes.

I need to remind caregivers about this all the time.  What they see as “dependent” for the entire dressing task actually can be broken down into moments where the person is helping, is less dependent.  The important thing is to approach the task slowly, allow extra time to process each step and plan the movement, and limit chatter. Demonstrating what you want is far more effective than speaking it.

Here are a few successes worth celebrating and preserving:

• She can sit at the edge of the bed, unsupported.
• She can hold the garment and at least gesture where it goes.
• She can push her arm through the sleeve.
• She can stand so you can pull her pants up.
• She can shift her weight side to side, anticipating what movements are required to help get her clothes on.
• She doesn’t resist dressing.

One of the biggest challenges during the early stages of dementia, when personality changes and denial are contributing factors, is the topic of bathing.

One of the most frequent issues is a lack of self-initiated routine bathing, and a resistance to others who suggest that bathing be done more often.

Here are some suggestions to increase bathing compliance and frequency:

1. Make the shower/tub as safe as possible.  Install grab bars and put a shower chair or tub bench inside to decrease the risk of falls.  If the individual resists the modifications, insisting that he or she does not need the devices, explain that the changes are for the future- if and when that time comes.  Respect his or her opinion, and make it more about your peace of mind than an actual need.
2. Have a conversation about social norms.  Discuss an appropriate frequency for showering.  The rationale you hear may not be in agreement with your own standards, but you should be able to land on a mutually acceptable frequency (once or twice a week may not be ideal, but it’s a fairly common frequency for someone who is cognitively and/or physically impaired).
3. Review the procedures for daily “bird baths”.  Many people who will not shower daily claim that they wash at the sink each morning.  Many times, the quality of sink bathing is not good.  Remind them what body parts need the most attention- and educate about the various skin problems that could result from improper care.  If the bathroom sink and floor are dirty and neglected, chances are their skin is too.
4. Keep a calendar or schedule of the self care routine.  Memory deficits are a leading cause of neglected self care.  The person may actually believe that he or she just bathed this morning, or may not remember that it’s been a week or more since the last shower.  Having a schedule or calendar to “check off” when the task was completed helps to promote compliance.
5. Get an outsider to do the dirty work.  As much as people in the early stages deny the need for help, they are frequently more cooperative and open to suggestions from outsiders.  An occupational therapist is the ideal professional to broach these topics and figure out a plan.  A personal care aide or home helper is the perfect person to actually assist with the bathing task.  The sooner an outsider is introduced into the situation, the better the acceptance of help will be throughout the course of the disease.

During the latter stages of Alzheimer’s disease, affected persons become completely dependent on their caregivers for survival.  Interestingly, most people do not die from Alzheimer’s disease itself, but from a complication or secondary effect of the disease.  Here are the five most preventable complications of Alzheimer’s:

1.  Falls

Falls are the most common cause of injury in older adults both with and without Alzheimer’s disease.  This is because there are so many causes of falls including muscle weakness, heart trouble, joint instability, visual disturbances, and sensory loss.  Alzheimer’s patients are particularly vulnerable to falls because they frequently don’t recognize their own limitations and lack the judgment to act safely.

It’s easy to recognize fall risk.  It’s harder to eliminate the risk.  Many interventions can mitigate fall potential including physical therapy for strength and balance training, occupational therapy for environmental modifications, low vision strategies, and cognitive compensation, and alarms/bells/whistles to alert caregivers of unassisted movement- but there is no substitute for supervision and engaging in activities to decrease fall risk.

2.  Skin breakdown

Decubitus ulcers (aka bed sores) are 100% preventable.  They just are.  Sometimes the situation, the complexity of the impairment, makes proper skin care difficult.  But difficult does not equal impossible.

Skin integrity depends on many factors- positioning and nutrition being major influences on the likelihood of a pressure sore.  Here’s how it works:  bony prominences, like hip and butt bones, push down through the tissue and compress blood vessels that supply the area with oxygen.  Good nutrition helps to keep our “seats” padded, but prolonged pressure against those bony areas will eventually lead to skin breakdown.  And it can happen quite quickly.

As able-bodied-and-minded people, we shift our weight quite regularly.  We never just sit or lie still.  Our bodies tell us when it’s time to shift our weight to the other hip, cross or uncross our legs, or lean forward and back again.  We are constantly in motion, even when we think we are still.  These impulses keep our skin safe.

Late stage Alzheimer’s patients cannot respond to those cues.  They require others to reposition them frequently, while avoiding other skin damaging actions like skin tears and friction/shearing.  In other words, Alzheimer’s patients require frequent change of position, but this should be done carefully and gently.

3.  Contractures

A contracture is a chronic loss of joint motion caused by shortening of a muscle or tendon.  In late stage Alzheimer’s disease, contractures of the knees, elbows, and hands form mostly from lack of movement- enhanced by neurologic changes in muscle tone making joints more resistant to passive movement.

Many people in the later stages of Alzheimer’s disease sit… a lot.  They stay in one position with their knees and elbows bent.  Frequently, if they are seated in a wheelchair with sling upholstery and poor pelvic support, their thighs and knees touch.  They may even pull their arms in tight against their chest if they feel cold.  Sitting in this position for several hours, and then being transferred back to bed curled up in this same position, leads very quickly to limited joint movement.  This makes it very hard to clean, feed, and dress someone whose limbs don’t move well.

Prevention of contractures is easy, but it requires diligence and consistency.  Simple range of motion exercises- moving the elbows, fingers, wrists, shoulders, knees, and ankles to the limits of their range- will prevent contractures and painful stiff joints.  If someone becomes resistant to range of motion, which is common if a person is confused or in pain, then there are ways to “trick” them into active movement that can be helpful.  We’ll save those techniques for another post.

A good wheelchair with appropriate limb, trunk, and pelvic support, and physical activities that engage the person to reach, shift position, or use his or her hands can make a tremendous impact.  Frequent range of motion, encouraging extension in bed, and providing medication or modalities for pain modulation can be all it takes to prevent contractures.

4.  Aspiration

When someone with Alzheimer’s disease dies from pneumonia, aspiration is usually the cause.  Aspiration is the inhaling of a substance or object into the lungs, and pneumonia is the infection caused by the fluids or particles that were inhaled.

Aspiration pneumonia can be prevented through proper positioning for safe swallowing.  A person should never be fed while lying in bed.  Ideally, the person should be sitting upright with the chin tucked slightly to prevent food or liquid from dropping down the airway and where gravity can assist the neck muscles in swallowing the food.

Food texture and liquid consistency also play a huge role.  If the food cannot be chewed properly, or if the liquid is thin (like water), it can easily slide down the wrong pipe.  Thickened liquids, like nectar or honey consistency, are actually easier to manage for someone with swallowing difficulties.  A speech therapist can help determine the swallowing status and which food consistencies work best.

5.  Dehydration 

Dehydration can sneak up on the unsuspecting Alzheimer’s patient and the well-intended caregiver.  Obvious conditions can lead to dehydration, like hot weather or a flu bug causing vomiting and diarrhea.  Less obvious contributors include medications, insufficient fluid intake, or electrolyte imbalances.  

Dehydration can cause confusion, dizziness, low blood pressure, rapid pulse, and weakness.

Prevention requires vigilance, a steady intake of a variety of fluids, and frequent monitoring of symptoms that could be attributed to dehydration.