Thursday, December 4, 2014

BOOK REVIEW: Dementia Beyond Disease

By Dr. G. Allen Power
Dementia Care has changed and is evolving. Unfortunately, we still follow the medical model, treating symptoms, rather than modifying our approach as those with dementia symptoms' abilities change. This author has proposed some thoughtful changed to the ways we manage the care of patients with these symptoms.

This is an excellent book. Groundbreaking ideas.

His previous book, Dementia Beyond Drugspaved the way for an enlightened way to manage treatment and care plans. Unfortunately, physicians tend to be slow to change. Drug-based interventions are failing, as family members refuse to institutionalize a loved one with dementia symptoms, and drug them into submission. Family member must be proactive, accompany loved ones, take notes, and visit long-term care (LTC) homes regularly on an irregular basis. Doctors who work for LTC are more concerned with efficiency, rather than individualized care plans, in my experiences. Widely accepted practices are being questioned by caregivers, family members, institutions (even the for-profits), and administrators. It is uneven, at best, however.

Non-pharmacological interventions

Our deficit based view of dementia has come to characterize people in terms of what they cannot do. Strategies fail to take into account their strengths, rather than harping on and bemoaning their weaknesses. This is a lesson I learned working with special needs students. Power cites a 'living death' for those in LTC, about 30 - 35% with dementia diagnoses receive antipsychotics. Devonand, et al, 2012, says drugs like risperidone are contraindicated. In fact, in my research this is something my late father was given, despite references to it having side effects for those with dementia. In my experience, nurses would phone the doctors, as for a drug, and it would be prescribed. Case closed.

Power sees a new approach to treatment plans that see the patient as one with changing abilities, rather than a fatal disease. The biomedical view has blinded us to the joys of caring for those with dementia. The Changing Melody Conference, in Toronto is a shining beacon. It resulted in A Changing Melody Toolkit, through University of Waterloo's MAREP.


There are seven domains of well-being cited by Power: identity, growth, autonomy, security, connectedness, meaning, and joy. What many housing conditions lack is a sense of personal worth, a sense of agency, social confidence, or hope. At least, these are the ones that make the news.

The cult of clock time, and tasks that drives most nursing home operations, is the long-term-care residence which revolves around clock time. A returned to the sanctity of lived time would be beneficial to remove some of the distress we see in long-term care. Sundowners syndrome also would be relaxed.

Sunrise or sunset - what are your rituals?
 Appearance, loss of self, and loss of the ability to recognize others, reflect a common view of people living with Alzheimer's. Sundowning often impacts people with unique and changing biorhythms been forced into an institutional schedule, causing their psyches to rebel. Sunset causes old patterns of activity, such as the end of the day after work, or past leisure activities, and could be thought to be caused by the commotion of people saying goodbye change of shift, for example. I think it is deeper than this, however. Circadian rhythms, and light levels, for example.

The first step in enhancing identity is to reject a narrow, biomedical view of dementia and the stigma and shame that results. We have to have a new normal. Fazio, 2008,  summarizes this in The
Enduring Self. The past must be allowed to influence the present, yet not to define it. One of my pet peeves is failing to ask a person prefers to be addressed in long term care, for example. Some people with dementia who have been called Dr. Davis all their lives, are fazed by perky little personal support workers (PSWs) waltzing into their rooms and calling them 'Dan.'
I was shocked to hear them call my father 'Ray!'

The Power of Language

Rather than calling them a patient, they are residents living with dementia not than suffering from dementia, or worse, a victim of dementia. Behaviour problems, being difficult, being bad, acting out, or wandering. Many terms such as a paranoid delusional are improperly applied based on all or one single observation. As with a diagnosis of cancer, we must refrain from the battle language and the negative stereotypes: 'fighting cancer.' We must use person-centred language in healthcare (for a few more examples).


Example of this concept of connectedness, include letting people decline certain activities in an activities group.  Being connected to someone with dementia is to respect their mistakes, such as refraining from correcting a person who misstates names, and does not remember a date or an event.

Continuity of Care

Continuity of care is important for us. We know how much we depend upon a hairdresser or dentist for our comfort levels. Substitute caregivers in LTC can make a resident insecure, and that we know that security arises from familiarity. Looking at positive care outcomes such as: reduced physical restraint use, urinary catheter use, proper pain management, and pressure ulcers. There is a significant improvement in homes that use dedicated staff assignments at a level 80% or more.


It is important to make a connection with a loved one in their present reality. Don't ask me, tell me about a name or date. Don't quiz me and test me. That way I don't feel pressured to find the right answer.
One of my pet peeves I spotted when visiting a friend of mine. She was in a private room and she kept the door closed most of the time. Personal support workers would barge in without knocking, and would see the space as being institutional, rather than as belonging to Kay, and it being her actual living room. Too common, also, are loud sources of noise from repair staff, or busy care staff in halls, alarms, announcements, and bells being rung. I think of those days I'd be at work on a PD day and the bells ring every 40 minutes come hell or high water. It's irritating.


Keeping loved ones feeling safe is something that must be done with dignity and respect. This is true for all of our loved ones, young or old, fragile or frail, near or far. Power tells a story about a man forbidden to go out the back door of an institution, all he wanted was to go out and see the flowers in the garden. Once they allowed that, he would safely go out and come back on his own. It's also about respect. I read, with horror, a Tweet that tells adult children to senior-proof their parent's bathrooms.
How undignified is this? A pet peeve of mine, is professionals posting articles on 'How to keep your parent from falling' or, "When to move your parent into LTC." If a loved one with dementia wants to do certain things, facilitate them as much as you can. Sure there are risks, but we are talking about quality of life here.
Another point Power makes – when someone tells you they are afraid of a perceived issue, or person, or place, tell them:

"This sounds really scary. I will keep you safe,"

The Lexicon of medical care

Another issues he touches on is the language we use. We don't use terms like retard or mongolism anymore. We've come to see that such terms are offensive. The DSM fifth edition has proposed dropping the word Dementia from the lexicon, in favour of minor of Major Neurocognitive Disorders. This is an excellent point. The person in not their disease. IT's better to refer to the condition not the illness or the disease, because this way the latter reinforces reductionistic thinking.
Preserving modesty, doing personal care and avoiding potentially disparaging comments, or any comments in public areas, will enhance privacy and dignity.

My client' wife told me today she hasn't painted since she got 'stupid.' It suggested to her that she is not stupid. Her brain in changing the way it thinks and it is thinking differently. People with dementia symptoms think, just in a different way that others. We have to suspend judgement and change the way we think about them and their abilities. We have to accept that their lives have value, their thoughts have value, and while we may not understand them, this is simply the way they are now.
  • Sometimes it helps to simply ask someone 'WHY?' 
  • Sometimes we must move beyond logic into the symbolism of their words.
  • Sometimes we must move beyond labels, hallucinations and delusions, and live in their world. 
  • Sometimes their changing perceptions may be like that phantom pain people with amputations experience. It hurts to not know.


Another area which could be improved is to remove double room situations, whereby people must share a bathroom. This limits privacy and gives them lack of security. We know from sleep studies that sharing a room can be detrimental to the mental and emotional well-being of a resident.

Dependence and waiting eventually become synonymous the dilemmas of dependency, as posed by Lustbader in Counting on Kindness. Sitting, waiting for help and care, is emotionally degrading.
Our medicalised view of the person causes us to see an expression of anger or sorrow is the emotional lability of a damaged brain, especially in nursing homes. We have an expectation that all must be tranquil, and we confuse the absence of emotional upset with well-being.

What would be beneficial for long-term-care care operators is to sit in a wheelchair and examine what it's like to move around the home.
Involving all stakeholders in negotiating risk involves several steps.
  1. discussion 
  2. exploration of values 
  3. conditions of empowerment 
  4. continue another empowerment 
  5. club decision 
  6. monitoring results 
  7. keeping stakeholders abreast of the process.
This will be the same as action research in education. Try it, test it, improve it!


This is an important aspect of care. We've always had important rituals around bed time, bath time, morning routines, evening routines. It's important to honour this part of our lives. This holds true for ceremonies, and special calendar days. In my experience, many LTC do much around these days like Mother's Day and other holidays. It is important to remember this at home, as well.

Now that we are living longer, and have better quality lives, we must remember to enjoy our leisure years. Here are questions caregivers can pose:

  1. What do you enjoy?
  2. What about that do you enjoy?
  3. Recently, what has brought enjoyment and happiness to your life?
  4. What is stopping you from enjoying any of these activities?
  5. How can we modify this for you?
  6. Is there something else you've wanted to do?
One thing Power suggests is the importance of volunteering. Many seniors around my area do so. It is possible that, with support, someone may be aided in volunteering in many places.
There are many ways to help make connections in their world: gardening, pets, being with people, young and old. There is a privilege and profound experience, a reward in caring for a loved one with dementia symptoms. Their lives can be meaningful, even if we cannot value achievement my monetary rewards, checking off tasks from a bucket list. We must build our lives around the number of times each day we laugh, or give thanks for the day we've had.
"Opening our eyes to the potential for growth begins by rejecting the view of dementia as one of pure decline."
We must enhance the daily joys we experience. Find simple pleasures in achievable or manageable goals. Faith spirituality, essence, this makes a human being. 

Other great resources

Holistic approaches are increasing in the better LTC and home care plans. Caregivers need much support. Here is an excellent webinar:

 The Experience of Spousal Caregivers of People with Early-Onset Dementia.

The solutions, treatment strategies and approaches Dr. Power offers can be utilized in any living environment.
Dr. Power's previous book Dementia Beyond Drugs creates video care plans. resources to bring a sense of identity into a care plan.

1 comment:

Al Power, MD said...

Thank you so much, Jennifer. And for the work you do!
Al Power