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I recently learned an expression that I say to myself all the time, even though it’s a bit disparaging in nature… 

KISS: Keep It Simple, Stupid

There are new frameworks and theories for managing Alzheimer’s behaviors being published all the time.  This is wonderful news for healthcare professionals who have had little research to guide them in the past.  However, there is limited access to these new concepts for the informal caregiver who is usually left to “wing it” on a daily basis.  I’ll let you in on a little secret.  It all boils down to making things simpler for the diseased brain that can no longer handle complex functions.  Yes, all the research yields the same conclusion:  Keep It Simple, Stupid.

There are different levels of expertise in the management of Alzheimer’s disease- from pharmaceuticals to architecture.  But for day-to-day operations in the home where someone with Alzheimer’s is being cared for, here are the three basics that most healthcare professions use as a guide*:

1.  Keep communication simple

Don’t be fooled.  Just because someone with dementia can talk a good story, don’t be mislead into believing that everything you say is correctly understood.  And sometimes the more you try to explain, adding layers of meaning and concepts that require interpretation, the more confusing the entire message can become.  Communication issues can be the cause of many battles, resulting from frustration as both parties are feeling grossly misunderstood.  Try to stick to these simple principles:

• Only give a one step command at a time.  Hold your breath while the first step is completed, and then instruct the next step. Demonstration goes a long way in reinforcing the action.
• Do not try to replace their reality with your own.  Do not argue just to be right.  Remember that the centers for reasoning and judgment are being clogged by plaques and tangles.  It is a disease, not an argument.
• Repeat along with me:  Validate, then redirect.  Validate, then redirect.  Validate, then redirect.  ”I am so sorry that your money is missing. Let’s talk about it over lunch.”
• Just be positive and affirming- even when you don’t feel like it.  If their stress is lower, yours will be too.

The bathroom is the one room in the house where most falls occur.  Regardless of the stage of dementia, strategic placement of grab bars can significantly reduce the risk of falls for all people.

People with compromised balance, cognition, vision, sensation, or strength need grab bars- and probably more than one. 

It is perfectly natural to reach for an object for stability.  Many times, unfortunately, the object might be a soap dish, a shower door, a faucet, a sink, or a towel rack… none of which are suitable items for supporting body weight or stabilizing posture.  Someone with impaired cognition may not see the need for a bar nor have the insight into their own potential for falling.  But, along the continuum of progressive dementia and the decreasing ability to learn new safety strategies later in the disease, installing them sooner is better than later.

If someone is resistant to the idea, bargain for just one to “see how you like it.”  Most people warm up to the bar right away.

Grab bars, installed by a professional into the studs, are ideal when placed next to the toilet- high enough to help the person pull upward and not just forward when coming to stand.  In the shower, one at the entrance/exit and one along the wall where the person stands would be ideal.  Having an occupational therapist or contractor specializing in handicap modifications determine the placement is a good idea.

Tub rails are excellent stabilizers when placed correctly toward the faucet-end of the tub, and are a terrific aide for transferring into and out of the tub.

Don’t forget the importance of non-slip surfaces on the shower/tub floor and rugs that do not slide and do not get tangled up under walkers and canes.  

During the later stages of Alzheimer’s, try wrapping the bar in a bright orange or red tape.  This is visually draw attention to the bar and help cue the person to reach for it.

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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.