Wednesday, 30 April 2014

Caregiver Wednesday--What elderhood is not

The legendary cellist Pablo Casals was asked why he continued to practise at age 90. "Because I think I'm making progress," he replied. 1

Here's a radical, outside-the-box thought.

Growth is possible until the end of life.

It is possible, in fact, desirable, for people to grow as people until they die. They can have new experiences, enjoy their passions, contribute and have a meaningful life.

Is this whimsical ramblings of a dreamer? No, it's a basic tenant of the Eden Alternative, whose vision statement says they are committed to eliminate loneliness, helplessness and boredom, and calls these the three plagues that account for the bulk of the suffering among our elders. 2

Our society has bought into the lie that elder hood, or old age, is a disease. It is terminal, to be sure, and often contains disease. Our bodies wear out. Our minds sometimes are subject to diagnoses which can leave us confused, agitated, frightened or anxious. But the spirit which lives inside of all of us, whatever is happening in our bodies and our minds, needs to be nourished. And can be.

If we believe this, our caregiving changes. We are not so much focused on the tasks that need to be done, but on finding the simple pleasures within a person that makes them tick. What brings them joy? What brings meaning to their lives? What fulfils them? The tasks (personal hygiene, dressing, eating etc.) still need to be accomplished each day, but they aren't the final goal. The goal is fulfilment and meaning. A day with purpose.

It's different for everyone, and each person may have several areas that accomplish this.The bottom line is, if we believe it's essential to life, we will be committed to finding it and ensuring their are opportunities for growth each day.

One resident walks with a walker and is cognitively impaired. But when he enters a room where upbeat music from his era is playing, his feet and hips begin to sway. With a dancing partner, his grin is contagious as he swings her around. This is his sweet spot. Another closes his eyes in pleasure and is swept away by the classical music playing in his room. Someone else loves to sit and chat with a cup of tea. One lady knits like fury, and when questioned says, "I like to make things." A severely impaired woman loves to listen to Anne of Green Gables being read, and leans forward in anticipation. A man waters the flowers and removes the dead leaves, remembering how he used to help his father do the same. Each of these people has purpose and derives meaning from these activities.

Here's another radical, outside-the-box thought.

Aging is not a disease.

In caring for our elders, we need to ensure we are not so smothering them with our care, we lose who they are.

If we do, we are the poorer.

And so are they.

1. from a post on Facebook

Wednesday, 23 April 2014

Caregiver Wednesday- The Buzz about Drugs

If you live in the Greater Toronto Area, it's all the buzz.

The Toronto Star for the last two weeks has featured articles exposing the use of antipsychotic drugs in Ontario nursing homes. "Ontario nursing homes are drugging helpless seniors at an alarming rate with powerful antipsychotic drugs, despite warnings that the medications can kill elderly patients suffering from dementia."1 It's shocking.

What are the issues?

These drugs were developed to treat severe mental disorders, and are effective for them. They were never meant to treat the elderly, especially those with dementia. "When antipsychotics are prescribed to seniors with dementia, it's known as an "off-label" use meaning a drug is being used for a condition or age group for which it hasn't been approved. It's legal for doctors to do this, and they do so with little oversight."1

Drugs are being prescribed for uses and a population for which it isn't approved? Why?

Good question.

Is it because they are effective?

No, the opposite is true. Dr. G. Allen Power, in Dementia Beyond Drugs (my book of choice at the moment) says, (referring to studies that have been done on the use of these medications on people with dementia) "even if we take these studies at face value, fewer than one in five people will improve due to the medication. How many doctors would give a patient an antibiotic that has less than a 20% chance of working, or a heart medication that helps fewer than one in 5 patients?" 2

The other issue is how you measure "effective." If a person with dementia is wandering, getting into other people's space and requiring monitoring, this is a problem. If you treat the problem by giving them an antipsychotic and the wandering stops, do you call it "effective?" What if what is happening is the person is sleeping most of the time, and is too drugged to wander? You got the desired result, but is it effective? Is quality of life even a consideration?

This "solution," which isn't a solution, is occurring at alarming rates. The Star article quotes statistics where 50-60% of the residents of certain homes are being treated with these medications.

Some of the side effects are over-sedation, loss of appetite and falling.

Are there alternatives?

Those who work within the present, broken system point to nursing and caregiver shortages. The doctors prescribe because the staff asks for them. If one PSW has 12 people to care for, and even one or two of them are agitated and difficult due to dementia, they need help, and this is the help of choice.

What are we doing? Has anyone stopped to ask--what are we doing to our elders?

Many are asking, and that which was accepted as normal and reasonable is being questioned. The use of antipsychotic drugs with seniors with dementia, except in the most severe of cases, is not right.

What are the alternatives?

Culture change. Rather than pumping billions of dollars into pharmaceuticals, we need to invest in staffing, and in training in alternative methods of dealing with behaviours. Sometimes a "behaviour" isn't that at all, but a reasonable response of a person with a certain background.

In his book, Power describes a woman who was restless in the evening, and kept getting out of bed after she's been settled for the night. Rather than giving her a sleeping pill, they talked to the family, and discovered that she was a dancer, and seldom went to bed before 4:00 a.m. throughout her adult life. They settled her in an easy chair with a television, in an open area where staff could ensure she was safe. She happily watched TV until she was ready to go to sleep at the time that was "normal" for her.

Culture change is expensive. It's time consuming. You have to get to know each person--their history, their passions, and what makes them tick. It's hard.

It's the only way.

2. Power, Dr. G. Allen, Dementia Beyond Drugs, 2010, p. 27.

Thursday, 10 April 2014

Caregiver Wednesday-- Culture change part 2

My mind has been circling a quote for a few weeks.

"Often the best therapy is to provide opportunities for happiness and increased meaning in the lives of residents." 1

These words are the result of an experimental intergenerational program between school children and elders in Australia. It is quoted by Bill Thomas, founder of The Eden Alternative, in the forward of a book I am reading (and loving) called Dementia Beyond Drugs.

It's simple, but profound, and forms the basis of everything involving culture change.

Instead of looking for a medical intervention when people with dementia exhibit the behaviours that are common with the disease, look for non-medical answers. Why didn't we think of this before?

Many reasons.

Our generation has grown up in awe of the medical advances that have made living longer and healthier possible. And indeed, we have much to be thankful for. Vaccinations, antibiotics, insulin, and advances in the treatment of so many diseases. I am not anti-medication. Even anti-psychotic and anti-anxiety medications can be effective when given in low doses, closely monitored and given after all other non-medical interventions have been tried. Sometimes they calm the person just enough for other, non-medical choices to be effective. The problem comes when they are our first line of defence.

There are other reasons we don't easily default to a more social, holistic approach.

It's expensive.

It isn't an exact science, and often requires many attempts to find the right key. And each person's key is different.

It's difficult to measure results. How do you measure happiness, purpose, control, personal growth? There are some indicators, but it's more challenging.

Another discussion in the book which has had me mulling for weeks, is the difference between care and treatment. "Care means helping a person or relationship to grow." 2 This isn't how I normally think of care. Isn't care "looking after"? "Doing for"? Although there is an aspect of that in our caring, if I am able to shift my focus from what I am doing to what the other person needs, there can be growth.

Caring in culture change says, "It's not about me, and what I am doing for you, it's about you--who you are and what you need to grow."

Treatment is more medical in nature, and more measurable. I have a wound. You treat it. It gets better. Treatment is important, because those we serve are frail, with multiple illnesses. They need treatment every day. It needs to be administered and monitored. However, they are not their treatments ("the wound in room 3" rather than "Mrs. Jones with the wound in room 3") and their treatment isn't the most important thing about them.

We wouldn't put our medicine cabinet by the front door in our homes. It's hidden away in the bathroom. By the front door, we have a wreath, a welcome mat and a family picture. These are the things that define us, and this is what is prominent.

If we are looking for culture change, our homes need to look like home, our care needs to find ways to bring growth, and our treatment needs to be accomplished quickly, so that residents can get on with life.

Vibrant, growing, interesting life.

1. Dementia Beyond Drugs, pg. x.
2. Dementia Beyond Drugs, pg. ix

Thursday, 3 April 2014

Caregiver Wednesdays--Culture Change

Culture change.


Culture change in eldercare.

I first heard the term a few years ago, and it wasn't until having the words come up in several conversations, lectures and workshops that I realised I didn't have a good understanding of what it meant. I understood change (although definitely not all the implications) but culture? It took reading and thinking and listening to be begin to get a handle on it.

Our society has had a certain accepted way of looking after our elders. We have government regulations to make sure they are safe, well-fed, clean and cared for. In fact, we have government regulations up the wazoo. The problem is the government regulations take on a life of their own, requiring documenting, regulating, inspecting and follow up. The people who are paid to do the caring spent huge amounts of their times managing the regulations. Also, I can be "safe, well-fed, clean and cared for" and be bored, feel useless, and as if my life is over.

Culture change says it doesn't have to be that way.

Here is one definition:"Culture change" is the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the voices of elders and those working with them are considered and respected. Core person-directed values are choice, dignity, respect, self-determination  and purposeful living." 1

How does this look, especially with people with dementia? Can they really direct their care? Have purposeful lives?

Yes. The answer is yes.

It look like this:

* George doesn't want to shower. He can't do it by himself, and he isn't about to let a woman, or even a man shower him. Showers cause him a huge amount of stress.  So the caregiver begins to talk to George about his grandmother, and while they are having a great conversation in the bathroom, she hands George the cloth and he cleans his front while she quickly does the back. He brushes his own teeth and shaves--tasks he's still able to do. They keep talking the whole time, and at the end, he gives her a hug.

* Mabel likes a slow start to the day. Breakfast is long over by the time she is ready to eat and get dressed. Mabel is allowed to sleep until she wakes up on her own. Her breakfast is brought to her on a tray, which she enjoys in her room. She is ready to face the day about 11:00. Some days, she will skip lunch, but have a sandwich around 2:00. By dinner time, she happily joins her table mates in the dining room.

* Doreen is in a wheelchair, and can't walk on her own any more. In her youth, she used to be a ballroom dancer, and when the right music is playing, her feet start to twitch. One of the staff helps her up and holds her to maintain balance, and she moves in time to the music. Doreen is smiling.

Culture change is about finding who the person is and what matters to them, and giving the needed care based on this. It asks. It listens. It respects.

At the end of the day, the elder, no matter what their physical, mental or emotional state, has purpose.
They matter. They always did, and they always will, until the end.

Culture change is difficult, expensive and incredibly worth every effort and every cent.