Advocacy, Care Partnering, Challenges & Solutions, Toward better care

7 paths to better dementia care

39216867 - path on the park

A guest blog post by RN/MHlthSc Leah Bisiani

What might someone living in the mid and later stages of dementia want to communicate with us if they could?

In my heart, I believe they would wish those caring for them to continually search for fresh and innovative ways to preserve their abilities, enable their self-expression and help them live a life free of the constraints that society places on people we call “different.” I also believe it’s our duty to honour those wishes despite the complex challenges dementia care presents. Further, I believe listening to people who live with dementia is the key to success as they alone can provide us with real insight into this disease.

Leah Bisiani logoUnfortunately, the stigma and misperceptions about Alzheimer’s disease (and other dementias) get in the way of effective listening. Furthermore, the misperceptions and misunderstanding about of behavioural expressions are often based on archaic, ageist, and negative stereotypes.

We tend to see behaviour as a result of a person ‘misbehaving’ or being ‘disruptive and attention seeking’ rather than as an expression of unmet needs. These erroneous beliefs result in unfairly judging and labeling people living with dementia, and lead to them being sedated with antipsychotic medications.

It’s time we reassessed our attitudes and deepened our understanding of dementia to create approaches based on empathy and compassion.

How frustrating it must be for people who live with dementia to be unable to effectively communicate their needs! Can any of us really comprehend the reality of those who live every day with dementia? How would we feel if we lived in a world surrounded by others who tried to impose their routines and their ways of living on us, and who didn’t seem to understand what we wanted and needed? How would we react?

We must not push our personal choices onto others. Doing so negates their value and relevance, and strips them of their personhood and the integral place they hold within the world. Instead of seeing behavioural symptoms as results of dementia, we must understand that they are expressions of need or underlying distress, which are often triggered by the interaction between people living with dementia, their caregivers and their environment.

In the complicated domain of behaviour management and dementia care, we must:

  1. Understand the world through the eyes of the person living with dementia, and capture their perspective
  2. Use our strengths, abilities, compassion to understand and assist them
  3. Be creative and imaginative
  4. Develop person-centred care models and maintain personhood
  5. Take into account and adhere to the specific and distinct preferences and choices of each individual
  6. Promote an uplifting and joyous lifestyle
  7. Maximise quality of life

Implementing these principles will help us to look deeper into ourselves, join people living with dementia in their reality, and open our hearts to love and compassion.

Leah BisianiLeah Bisiani Dementia Consultant/Masters Health Science is a registered nurse, researcher, author, and dementia care advocate. She promotes uplifting and joyous environments for people living with dementia so they may continue to live their life as they know it and retain the spark to thrive and engage with the world and people around them. She develops care models that allow care partnere to create environments which are empowering and enriching to people living with dementia. She shares her knowledge to all sectors within the health care industry, with a particular focus on community support. Leah blogs here.


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Advocacy, Challenges & Solutions, Hope, Videos

20 paths to dementia care homes away from home

Loren Shook not overmedicated

It’s time to transform care for people of all ages who live with the Alzheimer’s disease and other dementias – they deserve better than what they’re getting.Family care partners need more support, education and skills to meet the challenges they face every day.

The long-term care facilities in which we warehouse old people must be re-imagined.  We need people-focused environments well staffed by trained care workers who are devoted to providing the best possible end-of-life chapters to our elders.

The requisite dementia care revolution is slow in coming, but there are beacons of hope.I’m encouraged by people like Loren Shook, Co-Founder & CEO, Silverado, who is one of few change agents in the eldercare industry.

“The way (dementia) care services have historically been delivered is wrong,” he says. “People should not be slumped over and drooling in ‘feeder’ chairs. They should not be put in some corner, they should not be misunderstood, and they should not be overmedicated.

“Yes,” he continues. “There is a place for the proper use of medications. But medications should not be used to control the behaviours (of people who live with dementia) because we don’t know what else to do with them.”

Shook is right. Psychotropic drugs (including antipsychotics) are prescribed to elderly people living with dementia to sedate them into compliance. Experts worldwide agree this practice must stop.

We must take collective action to break down the barriers that stand in the way, and replace sedation with compassion, understanding and engagement. That’s what Shook and Silverado co-founder Steve Winner are trying to do in their facilities.

“When you reduce the medications people take, a lot of the side effects go away,” Winner says. “People who were apathetic, lethargic, couldn’t walk or were even bedridden suddenly awaken from the fog. They’re able to move around, strengthen their legs, and get out of their wheelchairs. The change can be dramatic.”

Addressing the use of dangerous and largely ineffective antipsychotic medications is the first step to better care. Here are 20 ways care facilities can improve their performance:

  1. Make love a core operating principle
  2. Leave the biomedical model behind
  3. Stop giving people with dementia antipyschotic medications
  4. Treat residents like adults, not children
  5. Call people by their names, not “pet” names
  6. De-institutionalize institutional environments
  7. Discover and cater to residents’ interests
  8. Engage residents in age-appropriate activities
  9. Encourage exercise and sensual experiences
  10. Ask residents to bring their pets with them
  11. Care more for people than tasks
  12. Support personal growth
  13. Uplift and celebrate, don’t diminish
  14. Use music, dance and movement
  15. Create a “positive-normal” environment
  16. Make days fun, not endless drudgery
  17. Hire employees based on heart, values and a desire to make a difference
  18. Invite employees to bring their children to work
  19. Be passionate and compassionate
  20. Foster a culture of innovation

Watch these approaches at work in this video by Dr. Cathy Greenblatt, sociologist, photographer, and author of Love, Loss and Laughter: Seeing Alzheimer’s Differently:

Is Silverado perfect? No, of course not.

Sadly, even a strong commitment to the highest standards of care may not eliminate the horror of elder abuse or inevitable accidents.

In 2010, a former Silverado employee was sentenced to life in prison for events related to the death of a resident and the abuse of others in 2007. Tragedies like these occur because it’s virtually impossible to know what happens between residents and care workers without around-the-clock CCTV monitoring, which is something I would support for all long-term care facilities.

Well-intentioned senior executives may be unaware of what really goes on in in their establishments when watchful eyes are averted. Elderly people with dementia are extremely vulnerable and unable to report how they are treated; care is only as good as the individual care workers who provide it, and individual facilities are only as good as the on-site management teams that run them.

No system or place is one hundred percent infallible.

“We had no clue of his actions,” Loren Shook is reported to have said at the time of the former employee’s trial. “In every way he looked like the model caregiver. He had all the characteristics of a sociopath. No one can determine the problems until they see the trail left behind.”

This is indeed an issue. Abuse is usually perpetrated when there is little chance of it being observed, and colleagues who witness it by chance may be reluctant to report fellow workers for fear of reprisals.

Also in 2010, a resident was found in walk in refrigerator after having “gone missing” at a Silverado facility. Accidents like these become more likely when facilities stop using physical and chemical restraints. The risk, in my view, is worth the benefit of people being enlivened rather than diminished.

Perfection is impossible.

That doesn’t mean we should stop striving to achieve it.

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i know what they liked to eat

Grilled cheese sandwhich

This is one in series of posts called “Little things count.”

From JR:

I work at an assisted living facility. Three people have passed this month; Clyde was on of them. I’m the cook and I never met these beautiful souls. But I know what they liked to eat.

Geoffrey wouldn’t eat anything but ham salad sandwiches. Nothing else. One day I made meatloaf with mashed potatoes and gravy. He ate that. It made me smile when his dish came back clean as a whistle.

Martha was on a puréed diet. I would make sure to give her the extra sweet purée dessert. My Mom was on purée before she died and wouldn’t eat anything but dessert. Loretta loved grilled cheese so she got one everyday on my shift.

Now Geoffrey and Martha and Clyde are gone and I’m sad I don’t know what Clyde liked to eat. Fly high you beautiful souls. I never saw you, but you touched my life and I’m thankful.

It’s the little things that count.

Share your “little thing” in the comments.

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Books, Challenges & Solutions, Death & Dying, Hope, Life & Living, Quotes

what matters most


Atul Gawande fears or hopes


If you or anyone in your family plans on growing older, you must read bestselling author Dr. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End.

It’s full of amazing wisdom, thought-provoking ideas, shocking statistics, heartwrenching stories and down-to-earth information about aging and dying with grace and dignity.

I absolutely love it!

I also love the idea of life being a stairway to heaven…


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Books, Challenges & Solutions, Death & Dying, Life & Living, Quotes

imagine aging differently


MAS AG MD meaning in old age is new


If you plan on growing older or anyone in your family does, you must read bestselling author Dr. Atul Gawande’s new book Being Mortal: Medicine and What Matters in the End.

A real eye-opener!

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