Dementia 101

As a Physical Therapist, I don’t actually ‘treat’ dementia. But, I do treat a whole lot of patients with dementia. Why do people with dementia end up on my caseload? Frequently, people with dementia fall and have fall-related injuries that require physical therapy. People with dementia are also at increased risk for social isolation, malnutrition, inactivity and inevitably, functional decline. And more than anything, because I treat older adults as a specialty, dementia is simply one of the common diagnoses I find on that long list of age-associated diseases that follows my prompt for past medical history.

Now while we all learned about dementia in PT school, and as I’m sure any physical therapist can attest to, knowing the pathophysiology and clinical features of this disease does not inherently make you good at working with someone living with it. The challenge of working with someone with dementia is not knowing what they need (that’s the easy part), but in your ability to actually get a person with dementia to ‘do’ the things - to complete a motor task or physical activity - and even more so, to modify it, progress it, or make it safer for their bodies. This is the part that even the experienced physical therapist (quietly raises hand…) can actually find really challenging.

The Cold Hard Truth

I spent the first five years of my career working as an outpatient neurorehab therapist. The next seven, I spent as a homecare therapist seeing older adults with a wide variety of injuries, illness and sources of of their physical decline. I went to an excellent graduate school (shout out to MGHIHP!). This is not said to impress you, but to lay the ground work that even the most experienced and well-educated therapists may share some of the challenges, preconceived notions and perhaps even prejudices about working with people with dementia that I had. Here’s the Cold Hard Truth: working with people with dementia is HARD. PTs are BUSY. And sometimes, combining a patient whose diagnosis makes them more challenging, with busy schedules and the productivity demands commonly placed on physical therapists, leads us to draw the following common conclusions when we see that word ‘dementia’ on the laundry list of comorbid diagnoses:

“Oh, they have dementia, they won’t have any carryover.”

“This will be quick, I’ll only be in a few sessions.”

“I’ll just do the basics and get out of here.”

“Dementia means they have no potential to get better. I’ll focus on family teaching instead.”

Have you had some of these thoughts, too? Does this make us horrible therapists? Does it make us horrible people? NO! It makes us busy therapists trying to do our best for a large population of people with the resources (time, education, energy, sanity, empathy) that we have. Could we do better? Sure could. Before I dive into how, I want to give you a brief primer on this common brain disease.

Dementia 101

Dementia is not a specific diagnosis, but an umbrella term that accounts for variety of diseases that impair cognition, memory, processing and behavior. While impaired memory may be the classic sign, people with dementia experience a wide breadth of symptoms that progressively impacts their ability to care for themselves and others, to function within their communities, and to remain independent, mobile and healthy. While Alzheimer’s Dementia makes up the majority of dementia cases (60-80%), other types including Lewy Body Dementia, Frontotemporal, Vascular and Multinfarct Dementias are also commonly encountered by physical therapists. While some dementias are reversible (such as dementias due to dehydration or nutritional deficiencies, depression, medication toxicity or metabolic encephalopathy), the majority have a slow, insidious onset and progressive nature. There is, of course, some natural slowing of reaction time and processing associated with aging, and in the pathological realm, a condition known as ‘mild cognitive impairment’ that may share features with dementia, but they remain separate entities nonetheless. There are two key features that distinguish normal age-related cognitive changes and mild cognitive impairment with a true dementia:

1. The individual must demonstrate a decline from previous level of functioning.

2. The impairments must significantly interfere with work or usual social activity.

Early Signs and Symptoms of Dementia

Identified by the Alzheimer’s Association, the following ten signs are commonly seen in early Alzheimer’s disease and other dementias. Of course, many of these can also often be a symptom of other diseases and disorders, so if you find any of these signs concerning, it’s always best practice to bring your concerns to your primary care team.

1. Memory loss that disrupts daily life.

2. Challenges in planning or solving problems.

3. Difficulty completing familiar tasks at home, at work or at leisure.

4. Confusion with time or place.

5. Trouble with understanding visual images and spatial relationships.

6. New problems with words in speaking or writing.

7. Misplacing things and losing the ability to retrace steps.

8. Decreased or poor judgement.

9. Withdrawl from work or social activities.

10. Changes in mood and personality.

Other types of dementia have their own commonly associated features:

With damage found in the brain’s outer cortex, Cortical Dementia tends to cause problems with memory, language, thinking and social behavior, with memory problems generally appearing first.

With damage to deeper structures, Subcortical Dementia causes more change in emotion and movement, along with problems with memory. In these cases, gait disturbances typically appear first.

The cumulative effect of many small strokes, Multi-Infarct Dementia typically presents with a progressive, stepwise decline in mental function and is typically seen in patients with a history of hypertension, smoking and cardiovascular disease.

Similar to multi-infarct dementia, and sometimes used interchangeably, Vascular Dementia is a result of chronic oxygen deprivation throughout the brain. Vascular dementia presents gradually, often presents with changes in vision, sensation and language deficits.

Lastly, there are some types of dementia that develop alongside of other diseases. Lewy Body Dementia can be diagnosed on it’s own or along with a Parkinson’s Disease diagnosis. With a clinical prognosis generally more worse than Alzheimer’s, symptoms typically include syncope, falls, loss of consciousness, delusions and hallucinations. Parkinson’s can also be associated with mild cognitive impairment with or without an eventual progression to full dementia in around 50-80% of patients with Parkinson’s Disease. Common symptoms of Parkinson's Disease Dementia include trouble with memory and concentration, visual hallucinations, depression and frequently, sleep disturbances. Dementias can also be found in people with ALS, Huntington’s Disease and in the setting of Normal Pressure Hydrocephalus and may be a consequence of an underlying brain tumor.

Communicating BETTER With a Person with Dementia

Getting back to my story here, I had the opportunity this fall to attend a virtual Dementia Friends Massachusetts Training. Dementia Friends is a global movement developed in the UK, which has now become a worldwide effort to change the way people think, act and talk about dementia. While this training was not physical therapy-specific (it is actually designed to educate the lay person in the community about being more compassionate to people with dementia) I found I was able to apply what I learned to greatly improve the way I was able to communicate with my patients with dementia, which in turn, enhanced how effective I was able to be as their therapist. In fact, I found this talk so helpful for my practice as a geriatric physical therapist, that I decided to complete the training to become a Dementia Friends Champion, so I can, in turn, train others. I was pleased to find that when I offered this training to other therapists involved in the geriatric community, the response was overwhelming. I currently have sixty therapists signed up to take this training with me in the month of December, and hope it is as helpful for them as it was for me.

So, what was it that I learned in this session that changed the way I treat? It gave me concrete tools to make communication easier, strategies that now enable me to more effectively teach the functional mobility tasks, therapeutic exercises and balance exercises needed to help these patients get stronger, improve mobility and decrease their risk of falls. It gave me a different sense of compassion then I had previously, allowing me to be a kinder, more empathetic therapist. It impressed on me the importance of teaching these skills - to other therapists, to family members, to the community - to widen the network of understanding individuals that surround people with dementia living in our communities. What follows are my favorite take-home messages from this training that I found most influential in my physical therapy practice. If you want to learn more, I encourage you to sign up for a Dementia Friends training session - and if you want to teach it to others, the Champion training.

Dementia slows processing time, but doesn’t make it impossible.

It can take up to 20 seconds from the time you say something, for it to be processed and understood by a person with dementia. While our instinct may be to rephrase or redirect when our initial direction goes unfollowed, try waiting that 20 seconds first. Often, while we may be trying to rephrase to make it more easily understandable, this actually adds more layers to be processed and makes the process more convoluted to the brain. Wait the 20 seconds, then either repeat the same request - or try an alternative approach.

Keep directions clear and simple. Less words. More demonstration.

Visual information is processed in a different area in the brain than speech and words. People with dementia will struggle more and more with explicit direction and declarative learning as their disease progresses. However, the ability to process visual cues, mimic demonstration and learn procedurally remains in-tact longer. Using strategies to promote procedural learning (familiar tasks, repetition, use of functionally-relevant exercise programs) will be more effective than explicitly teaching the task.

Feelings, like emotion, love and happiness, remain the longest.

We’ve all been there. Sitting in a hospital room or an assisted living apartment, with a person with dementia, locked into their own confusion, unable to communicate in any meaningful way. Do we try to communicate or simply work with them in silence? Do we use our tone, words and body language to promote an atmosphere of empathy and caring - or match them with an equal lack of expression. Armed with a better understanding that people with dementia are still able to feel an intrinsic sense of emotion, love and happiness, even without the ability to provide any reciprocity in conversation, I’m far more apt to provide them with a caring smile, accepting body language and efforts to engage them beyond whatever therapeutic tasks I may have planned.

And you know who needs to know this more than anyone? Their families.

The more people that understand these concepts, the better.

How many times do we witness well-meaning family members and friends (even sometimes, coworkers) falling into the pattern of talking ‘above’ their loved one with dementia, as if they aren’t even there? Getting frustrated, even laying blame on lack of effort, or ‘behaviors’ instead of the underlying brain disease that causes it in the first place? Don’t you think if they better understood the cause of these behaviors, and had the tools to communicate with less struggle, that they would be better able to support their loved one in a more compassionate way? There are 5 million Americans living with Alzheimer’s Dementia. There are 16 million others who provide unpaid care for them. Not to mention the community members that interact knowingly or unknowingly these individuals every day. Waiters and waitresses. Medical assistants and other health care professionals. Retail store clerks, librarians and other acquaintances. The more people people we educate, the greater the chance that an individual with dementia can be met patience, empathy and respect.

Ready to become a Dementia Friend?

Check my Upcoming Events page to see if I am offering a training and feel free to join me.

Or, check the Dementia Friends website to find a session local to you.

Michael J. Fox Foundation Research Update

I had the opportunity to sit in on a Michael J Fox Foundation research update this week, presented by Rachel Bulmer and Melanie Demakis, and wanted to share some updates with you that they shared with us. For those of you unfamiliar with the Michael J. Fox Foundation, they provide financial support to researchers working not only to advance the treatment of Parkinson’s Disease, but to find a cure. 

While I’ve always tried to stay up to date on management of the patient with Parkinson’s to provide the best standard of care for my own patients, I also have personal interest in the topic as my mother is living with Parkinson’s disease. This webinar was a great opportunity to hear about current state of genetic research and also to learn about some recently approved pharmacological interventions.

Genetic Trials

The presenters discussed the importance of finding a concrete biomarker for Parkinson’s disease. A biomarker is a quantitative measurement tool that enables researchers to more definitively determine efficacy of a treatment in testing, and also better identify the current stage of a person’s disease.  As there is no current validated biomarker for Parkinson’s disease, researchers have to rely primarily on clinical observation and functional outcome measures to determine whether a new medication or genetic treatment has made a significant and clinically relevant difference. They are able to perform brain scans that show some degree of dopamine loss, but this value is difficult to standardize and has not been used in a validated way as of yet. 

They discussed three areas of genetic research that are potentially relevant to finding a better treatment, or possibly a cure, for Parkinson’s disease. Alpha-synuclein protein is one of these areas of interest. Located in the brain, mutation or overexpression of this protein is believed to play a role in the development and progression of Parkinson’s disease. This protein essentially folds into clumps, leaving Lewy Body deposits, which slow the transmission of dopamine within the brain, leading to the motor effects we see in patients with Parkinson’s disease. There are presently 13 Phase 1 to 2 trials investigating how to slow or prevent the expression of alpha-synuclein, in turn, slowing or stopping the progression of the disease.

The other two genetic avenues they presented were related to the genetic markers GBA and LRRK 2. With 6 GBA trials, and 3 LRRK 2 trials already in progress, two large companies, Biogen and Denali, just announced they will be combining efforts to support a Phase 2 LRRK 2 trial. This is significant, as with promised financing of $1,000,000,000, their support to the project speaks to their belief that this research may be particularly promising. 

Pharmacological Treatments

The presenters also reported on three new medications that have recently hit the market. Interestingly, all three share a common goal - to reduce the experience of off-times, while each one approaches the problem in different ways. Kynmobi, a thin-film apomorphine strip can be taken sublingually as a rescue drug during off times. Ongentys, a COMT inhibitor, is also taken by mouth in pill form once daily, and though slightly older news, they also mentioned Inbrija, an orally-inhaled form of levodopa, which can be through an inhaler on as as-needed basis to reduce off-times as well.

Lastly, they touched upon the importance of volunteering for clinical trials, whether as a healthy control, or a person with Parkinson’s. You can access their trial database here and learn more about these opportunities. 

I thought this was a great over-coffee opportunity to hear about the latest progress in Parkinson’s Disease research. You can see more webinars from Michael J. Fox Foundation here. If you would like to support this wonderful foundation, you can make a donation here.