Dementia Beyond Drugs
Harvest Home Care will provide live-blog updates from the Dementia Beyond Drugs workshop 9:30 a.m. to 5 p.m. June 3 at the University of Montana featuring internationally-recognized dementia and culture change expert Dr. G. Allen Power.
Unless otherwise noted, the speaker is Dr. Al Power.
UPDATE 1 (10:30 a.m.)
Montana’s ranking on use of antipsychotic drugs is better than average at 17th nationwide, but there has been no improvement over the previous year. There is a similar flatline in progress in most states that we need to address.
There are two big secrets about the use of antipsychotics that I want to reveal:
- Antipsychotic abuse to treat dementia is not a U.S. problem.
- Antipsychotic abuse is not a problem exclusive to nursing homes. The majority of people living with dementia live in the community, not nursing homes. What limited evidence we have indicates that prescriptions of antipsychotics in the community are much higher than in nursing homes.
1) Antipsychotics are largely ineffective and dangerous
2) In fact, there is no chemical rationale for using antipsychotics other than sedation (not even in Lewy body dementia),
Antipsychotics are not the problem!
UPDATE 2 (11:00 a.m.)
The real problem is the notion that people need a pill! The “Pill Paradigm” comes from deep-seated societal patterns and beliefs:
- Stigma — Immediately upon diagnosis we stigmatize the person living with dementia.
- Ageism and able-ism — This stigma leads to prejudices against people based on their age and abilities.
- Desire for the “quick fix” — Our media and culture are obsessed with easy solutions.
- Relentless marketing of pharmaceuticals as the answer to our needs.
All of these deep-seated beliefs and social patterns are fueled by a narrow biomedical view of dementia.
The Biomedical View
- Described as a constellation of degenerative diseases of the brain
- Viewed as mostly progressive, incurable
- Focused on loss, deficit-based
- Policy heavily focused on the costs and burdens of care
- Most funds directed at drug research
This biomedical view is negative and declinist and blinds us to alternative approaches to understanding and engaging with people living with dementia.
UPDATE 3 (Noon)
Dr. Al Power’s definition of dementia:
Dementia is a shift in the way a person experiences the world.
What does that mean? Well, the neuro-typical way of experiencing the world is highly reliant on logical facts and words to define and articulate what you are experiencing. Living with dementia will result in changes to the brain that make it more difficult to recall facts and process information logically. As a result, people living with dementia tend to experience the world based more on their feelings and emotions.
Who would argue that growing more in touch with your feelings and emotions is a handicap? Recognizing this increased ability as a strength is key to shifting the paradigm of dementia away from a deficits based approach to a strengths-based approach.
It is also the key to communicating and engaging successfully with people living with dementia.
For example, anyone who has spent time with someone living with dementia knows they will inevitably ask questions that are difficult to answer. Why can’t I go home? Where is my mother? So often we cause distress by answering truthfully—“Sorry, your kids sold your house” or “Your mother is dead”—or we can risk lying—“Your house is being painted” or “Your mom will visit tomorrow.”
Instead, we need to answer those questions based on the emotions and feelings that are being expressed. First, acknowledge the emotion that is being expressed—“It sounds like you miss your home. It must be hard to be away from a place you love.” Take a moment to listen and talk to them about the emotions they are expressing.
For example, when a woman asked me where her mother was I took the time talk to her about how she felt about her mother. Then I asked, “if your mother was here right now what would she be doing?” The woman replied, “she would be loving me.”
This woman was expressing the basic need to be loved. She was telling me that the staff were not meeting her need to feel loved.