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Author: 
Kim Warchol, President and Founder of DCS at CPI 
About Dementia Capable Care

It takes a village, truly it does, to deliver Dementia Capable care. Dementia Capable Care helps the person to live well with dementia and empowers and supports their loved ones and caregivers.

Let’s review the principles and beliefs of Dementia Capable Care that the village will deploy.
  • We see a person before a disease and prioritize personhood in all interactions.
  • We understand and incorporate dementia stage information into setting realistic goals and adapting for the person to have success in meaningful activities.
  • We see the dementia stages through the lens of “glass half full” and put the remaining abilities to work for greater independence and less burden of care.
  • We understand behaviors are a form of communication. Distress “behavior” is a reaction to a stressful situation in which a person with dementia is telling us something is wrong. With this in mind, we take responsibility in being able to prevent or reduce distress behaviors without drugs.
  • We prioritize hired staff and family collaboration along the entire journey, as partners in care.
What are the core approaches this village learns to use?

Every component works together, cohesively.

  1. Person-centered care. This concept has led to a movement called culture change. This “person first” approach is how we would all want to be cared for, with or without dementia. When someone has dementia, they need advocates to make sure their personhood (e.g., history and preferences) are incorporated and honored.
  2. Dementia stages for supportive care: We use Allen’s model and cognitive levels to describe the characteristics of the stages of dementia and to identify a person’s best ability to function potential. Stages act as our care road map and help to set realistic expectations, inform needed adaptations to our approach, and clear muddy waters (see March 2024 blog).
  3. Crisis Development Model. Not all behaviors are the same. We describe “behaviors” on a continuum of severity and escalation. The goal is to use this model to prevent distress behaviors by eliminating situations that would cause the person stress. The next goal is to safely and effectively de-escalate behaviors early, so we prevent a crisis situation. We use ourselves as the therapeutic intervention, thereby reducing the use of harmful drugs to “control” behaviors.
About the village.

Every person works together, collaboratively, as a powerful team.

Who is it that envelops the person living with dementia, and therefore matters the most regarding delivering these principles and approaches? How must these essential roles all work together to get the best outcomes for all?

Let’s explore these roles, in no particular order. Each is vital. And let’s remember, as the expression goes, “The sum is only as good as its parts.”

Key Role #1: Loved Ones (of the person in care)

Loved ones are the keepers of the information we all need to know. Family and friends must educate hired staff about the person in care providing essential information such as history, preferences, stress triggers, and familiar routines.

And those who know the person with dementia the best are important informants to help discover and monitor cognitive level (stage of dementia).

Key Role #2: The Physician Team

Early detection and intervention and accurate diagnosis are vital for many reasons. Dementia simply refers to a group of symptoms. Physicians must go further than a dementia diagnosis alone, testing for the cause of these symptoms. The physician team (general practitioners and specialists) will (a) routinely screen for any indicators of cognitive impairment interfering with function and safety and then, as indicated, (b) will initiate the appropriate testing to identify the root cause and the specific type of dementia.

Family practitioners may do basic tests such as blood work as preliminary testing. If no root cause is found for cognitive changes, they should refer the patient to a specialist such as a neurologist or geriatrician for advanced cognitive and other testing.

Once all testing has been completed, interpreted, and a diagnosis made, physicians initiate an appropriate treatment plan which often includes medications. But this treatment plan should always be holistic, with ways to help cognition or reduce “behaviors” without medications, such as through diet, exercise, and care steeped in Dementia Capable Care principles and approaches. Physicians should refer to social workers and dementia specialized rehab professionals such as occupational therapists to work with the patient and their family one on one.

Key Role #3: Rehab Professionals (spotlight on occupational therapy for dementia)

When rehab professionals gain dementia specialized assessment and treatment skills, they are a powerful ally to enable someone to live well with dementia. However, rehab professionals such as occupational, physical and speech therapists must undergo a major shift, realizing their role isn’t limited to rehab.

  • Rehabilitation means to restore what has been lost. That approach doesn’t work well in dementia care, a chronic and progressive disease. These professionals can and should also provide habilitation (or compensatory care).
  • A habilitation approach works well with chronic diseases like dementia. In this case a therapist will assess strengths (the remaining abilities) and deficits and deploy adaptive strategies enabling the person in care to use those abilities, while compensating for their deficits. This compensatory care approach facilitates the highest level of function and safety possible, at every dementia stage.

Let’s take a closer look at my profession of occupational therapy and shed light on the key role we play in habilitation and quality dementia care. According to The American Occupational Therapy Association, “Occupational therapy (OT) is the only profession that helps people across the lifespan do the things they want and need to do through the therapeutic use of daily activities (occupations). Occupational therapy practitioners enable people of all ages to live life to its fullest by helping them promote health and prevent—or live better with—injury, illness, or disability.”

In OT we use a functional approach for cognitive assessment, and this is called functional cognition. This function-focused lens during assessment easily bridges into functional care and treatment plans:

  • We write goals aimed at optimizing a person’s level of function in meaningful activities.
  • We use our unique cognitive activity analysis expertise to adapt the environment and meaningful activities to the just right level of challenge, for a person at every stage of dementia.

When I started specializing in dementia care I created my practice, Dementia Care Specialists, as an Occupational Therapy Medicare Part B private practice providing this type of assessment and treatment. I received referrals from physicians across the Chicagoland area to see their patients diagnosed with dementia. I would assess the person in their home setting, work with them and train their families to optimize independence, engagement, safety, and quality of life at home. It was a wonderfully successful practice in that we were able to support the person with dementia, their families and/or hired staff. We saw great outcomes such as keeping the person with dementia at home longer and easing the burden and stress on their families.

Now, some 25 years later, this practice is gaining traction as a part of the Dementia Guide Model (see blog from January 2024). I am thrilled to see this advancement in dementia care and hope all therapists will seek dementia specialized training and certification. The Dementia Guide Model is a perfect fit for the knowledge and skills of a dementia specialized occupational therapist. By the way, I’d like to give a shout out and wish all my OT colleagues a happy occupational therapy month!

Key Role #4: Nurses, Nursing Assistants and Hired Companions

Nurses, nursing assistants and hired companions frequently have close interactions with individuals with dementia. These team members often ask their client to do something “personal” in an intimate space such as taking a shower. They may ask the person in care to accept or do something uncomfortable or scary such as receiving medications or an injection, or walking with assistance, as examples. These team members must have patience, knowledge, and skills to set the person with dementia up for success. This means being able to gain trust and agreement, knowing how to communicate for mutual understanding (avoiding costly miscommunications), and skillfully adapting their approach, the activity, and the environment to the needs of each stage of dementia.

A Dementia Capable Care trained nurse or assistant will have the needed expertise that helps them to set up and come into a care session prepared, having the knowledge and skills to get the best outcomes from the care interaction. This includes being able to prevent or safely deescalate distress behaviors that are often triggered during intimate or uncomfortable care experiences.

Key Role #5: Social Workers and Care Managers

Social workers and care managers also need Dementia Capable Care skills for similar reasons above. But additionally, social workers take on a significant role in supporting families. What does that mean in dementia care? It means….

  • Talking with loved ones, really listening, and supporting. It starts with a simple question, “How are you doing?”
  • Guiding to resources that can help such as transportation or elder law services, private companions and other help at home, and education and support options for loved ones.
  • Observing, supporting, and reporting on the status of the person in care, and their environment.

Key Role #6: Others who interact with individuals with dementia in a senior living, home care, or other community setting. (This includes the activities department, recreation therapists, wait staff at a restaurant, bank tellers, or the grocery store clerk.)

Dementia Capable Care skills will improve the effectiveness of all these individuals to confidently and competently interact. Anyone who engages with someone with dementia should know the basics such as how to adjust their communication to help a person with dementia to understand and respond successfully and how to calm a distress reaction. Our ultimate vision is to have a Dementia Capable Society so essentially everyone needs some basic training.

Key Role #7: Owners and Executives (where those with dementia receive services or live)

Leadership matters! A lived mission, a person–centered and positive culture, operational support, access to the most effective training, recognition for training accomplishments and jobs well done, dementia supportive environments, realistic staffing levels, are all dependent upon committed leadership. Committed to what, you might ask?

  • Committed to providing the best care for the person in care served by their business.
  • Committed to the promises made to client families.
  • Committed to their team - their success, development, safety, and well-being.

In summary, the village is vast, but must work as one cohesive unit. Members must be on the same page, rallied around the same macro and micro goals, empowering one another, and holding each other accountable. Communication among the team members is essential for the best results.

Loved ones are both an important partner in care and someone the team must care for. As an example, in my January 2024 blog, I introduced you to Theresa, whose husband Bob has Lewy body dementia and lives at home. While Theresa is strong with very broad shoulders, she admitted even little things can sometimes surprisingly throw her into a crisis. Her stress can sometimes overwhelm.

When I asked Theresa, “How are you doing,” it elicited a tear. She said, “Nobody ever asks me that.” Theresa went on to say a social worker comes to her home periodically and asks a list of questions to whatever family member is there to answer. “They often stay five minutes and leave,” she said. “And no other health care member ever asks how we are doing or has a real conversation with me.”

We can and must do better! Living with dementia doesn’t have to mean suffering from dementia. A dementia capable village works compassionately, skillfully, and collaboratively to help the person living with dementia, their care partners and loved ones to thrive.

Let’s create a dementia capable society, together. And remember, the sum is only as great as its parts. It all starts with one – Each and every ONE of us, taking ONE step towards improvement, with ONE shared goal, because it matters so much!

Want to hear more about this from Kim?   Check out the newly released video from the: Let's Talk about Dementia with Kim Warchol: A New Perspective: Quality of Life with Dementia is Possible

Interested in dementia specialized certification and training check out our training options

Want care plans that are person-centered and dementia stage informed for your entire team to use? Check out our new Dementia Capable Care: Care Plan Package

Have questions or want to learn more? Contact us: Call: 877-816-4524 or Email: dcssolutions@crisisprevention.com

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Posted: April, 2024

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