Against the Dying Light

CHAPTER 4

Caregivers

A Hell of a Grind


For more than 15 years, Don Mahood has been trying to hold it together - for him and his wife, Mary Charlotte, who, now in her mid-70s, is in the advanced stages of Alzheimer's disease.

Before an official diagnosis - which took nearly 10 years after the first signs of the disease - Mahood was stumbling along, directionless, trying to make sense of the changes in his wife's memory and capabilities, and their relationship as husband and wife.

"When it first started, I was angry and frustrated. I thought, 'Why us?' We were just entering retirement and going to Florida every winter - this was our time. We got to go three years in a row and had a wonderful time. But, I knew there was something wrong. You know, you live with a person that long," said Mahood, who recently celebrated his 50th wedding anniversary with his wife.

The first sign something wasn't right was when Mary Charlotte, then a nurse, began running into issues at work. She was not yet 60 at the time.

"As a husband, you defend your wife. I thought, maybe they were picking on her because she was a top-notch nurse; she was really good at what she did. In retrospect, the problems she was having were memory-related. It's quite a struggle though, to get to the point where you get a diagnosis, because there's denial."

As the disease progressed, Mahood said it put more and more of a strain on their relationship. "It's been a hell of a grind. It just takes the rug right out from under you."

When Mary Charlotte was finally and officially diagnosed with Alzheimer's in 2011, it became much easier to access community programs and support, including the Western researcher-developed Enhanced Caregiver Education training program offered through McCormick Dementia Services.

The program was developed and led by Western researchers J.B. Orange, a Communication Sciences and Disorders professor, and Marie Savundranayagam, a Health Studies professor, both of whom have spent their careers studying complex communication challenges arising between dementia patients and their caregivers.

"How we can impact the way we care for older adults and their caregivers? How are we doing this care as we wait for a cure to come? I fully support research to find a cure - but, in the meantime, people have real problems that need to be addressed, today or even yesterday," Savundranayagam said.

"I wanted to deal with the most vulnerable. When you compare cancer caregivers to those who care for people with dementia, the latter have worse scores and higher risks of mortality. Part of the reason, I think, is that with cancer, you can still communicate and maintain the relationship. With dementia, it's so much more challenging to have the same relationship."

According to Savundranayagam, strategies to help caregivers communicate with dementia patients in a way that is respectful and person-centred goes a long way in improving relationships and relieving some of the burden and stress that goes along with being a caregiver.

"What are the strategies that work, that don't work? We as researchers may know, but caregivers don't necessarily know," she said. "We always think it's a really good idea to speak slowly. If you have dementia, it takes a lot of effort to remember what people are saying. The longer it takes for you to blurt it out, the harder it is for them to remember. It's not about slowing it down - or speeding it up either - it's about keeping it at a comfortable pace."

For Mahood, the strategies he's learned through the caregiver courses have changed the way he approaches certain situations with his wife. He even admits to opening up the binder and referring back when faced with a new or difficult situation.

"I cannot speak highly enough of the programs. It's evolved to the point where now, because of the strategies, I've learned how to make situations easier. How I wake her up, how I talk to her, how I hug her, how I make her laugh. Little things. Before I'd say, 'Come on, get up, we have to get going.' Now, I sit on the bedside across from her and make small talk, tell her that I really love her, maybe tell her a funny little joke and, all of a sudden, it changes the mood. I wouldn't have been able to do those things had I not taken the class - well, I would have been able to do them but it would have been war. And we'd both be upset."

While most of Savundranayagam's work has focused on the impact of communication challenges on family caregivers, like Mahood, she is also looking at ways to assist personal support workers. In partnership with McCormick Dementia Services, Savundranayagam recently developed and completed a six-week communication training workshop specifically for personal support workers who care for patients with dementia.

"Our rationale is that people with dementia are a vulnerable population, but the other vulnerable population are personal support workers in home care - they do the hardest work, get paid the least and don't have the best training," she said. "At least if you work in a nursing home, you have people to talk to. When you're in home care, you're just on your own. Let's go and do the work with people who really need it the most."

She hopes to eventually follow up with personal support workers in the home, to monitor whether communication has actually changed based on the training and simulations her team has provided.

Mahood's friends still don't know what to say.

They mean well; they simply don't know how to approach the couple given Mary Charlotte's illness. Mahood knows people are ignorant of the illness. And ignorance can breed fear. And fear can lead to isolation.

"Your friends start avoiding you. They'll see my wife in church and they'll say, 'Well, she looks so good, she looks alright to me," Mahood said, throwing his hands in the air. "If I hear that one more time, I am going to scream. Living with someone with this disease 24-7 is altogether different than seeing them for an afternoon or an hour or a day."

He is stressed, tired, at the end of his tether - "I'm like a gerbil in a cage, seven days a week."

All the duties of their life together fall to him. Not just the big stuff they shared in life - the groceries, laundry, home upkeep - but also the basics. He dresses Mary Charlotte, combs her hair, puts toothpaste on her toothbrush. Mahood quit playing hockey because he cannot afford to get hurt.

"When you get into this thing and think you're going to get help from your family, you're not. It's just the way it is. They're on their own career paths and have their own children. It took me awhile to realize they're grieving, too. Your friends ignore you; they don't call because they don't know what to say. So, you become isolated. It becomes very lonely."



Don Mahood

That loneliness is driven by one important fact. "I have lost my partner. I have lost the woman I could talk to over a cup of tea, discussing the day, or what was going on, or what we wanted to do over the holidays. It is all gone."

He continued, "It's the toughest journey I have ever been on. I'm not her husband anymore; I'm her caregiver. You can do things that make it easier - and I discovered those as we went along. The biggest thing is to get as much knowledge about the illness as you can. Don't rely on what somebody tells you. Until you live it 24-7, you haven't got a clue." he said.

In addition to her education and training work with family caregivers and personal support workers, Savundranayagam is also working with Orange as part of the Canadian Consortium on Neurodegeneration in Aging to investigate the impact of multi-sensory impairments - hearing and vision - on patients with dementia. The national, longitudinal study will provide data for an evidence-informed approach to communication strategies.

According to Orange, this study is ground-breaking in its investigation of multi-sensory impairments with regards to dementia patients.

"Those problems are going to become more common as the population continues to age and you get this accumulation of vision and hearing problems. You've got the cognitive and language problems from the dementia and then you superimpose sensory issues, such as hearing and vision challenges, which makes it that much more difficult," said Orange, who's been researching in the field for more than 25 years. "Internationally, there isn't anyone working on dementia communication and single and dual sensory areas. In that regard, the research we're doing is probably leading-edge."

The field itself is particularly compelling to Orange, not only because of its complexity, but also because of the number of individuals affected by communication challenges.

"Three-quarters of a million Canadians have dementia. If you take the affected person, plus a spouse and two others who are directly affected by the disease, you have three million people - a little less than 10 per cent of Canada's population - who are directly affected by this disease. The tsunami is here. It's a huge challenge, but we're well positioned at Western because we have quite a number of people looking at dementia from a myriad of perspectives."

For Orange, communication is key, since difficult behaviour with Alzhemier's patients is often correlated with communication problems. And communication problems contribute to caregiver burden.

"How do you care for somebody? By doing tasks for them. By communicating with them. We are often attuned to people's 'cant's'. It's easy to be the critic. At the same time, you want to say: 'What can they do?' 'What retained abilities do they have?'

"The person is still there. Even in the late stages of the disease. They just have great difficulty getting the words out. We sometimes fall into the trap of treating them like they are passive and not really there, but what is telling in this late stage is there are these islands of coherent language. We just need to find the right window in which to look at them."

Mahood's relationship with his wife has changed over the course of the disease. Today, it looks nothing like it did when they were starting out as a young couple. Mary Charlotte is currently attending programs at McCormick six days a week. Her wait-list time is coming to an end, and she will be in long-term care shortly.

With Alzheimer's in the family - Mary Charlotte's brother recently passed away after suffering from the disease - Mahood said his three daughters, who are all now in their 40s, are very concerned about the potential of developing the disease. It is his hope there will be a breakthrough soon, for their sake and for that of others facing the disease. In the meantime, he will continue to employ the invaluable strategies he's learned through caregiver communication programs.

"It worries (my daughters). You can't hide from this stuff. It's who you are," Mahood said. "But, there's some encouraging things out there now. Hopefully, there will be some inroads soon."

He is not bashful about telling his story. He'll scream it from his rooftop if he has to in order to get the attention of families just starting this journey.

Understand Alzheimer's doesn't impact a single person - it hangs over families. Learn about the illness. Connect with people on the same journey with loved ones. Take all the courses.

"It is all so important. It forces you to think about you, your partner and where you are at. You cannot sit there and think how it is going to get better. It doesn't. It gets worse. So how are you going to deal with that?"



"I cannot speak highly enough of the programs. It's evolved to the point where now, because of the strategies, I've learned how to make situations easier."


"A hell of a grind" written by Krista Habermehl
Communications Specialist (Alumni and Development)


Weathering the Tsunami


"The tsunami is here. It's a huge challenge. But we're well positioned at Western because we have quite a number of people looking at dementia from a myriad of perspectives."

If communication is the key to self-expression, as well as the manner in which we experience meaningful connections with our fellow human beings, what happens when we are robbed of the ability to effectively communicate with one another?



Marie Y. Savundranayagam

Health Studies professor Marie Y. Savundranayagam has spent her career studying the complex communication challenges between Alzheimer's disease patients and their caregivers, with the idea of strengthening those bonds and decreasing caregiver burden.

"How can we impact the way we care for older adults and their caregivers? How are we doing this care as we wait for a cure to come? I fully support research to find a cure - but, in the meantime, people have real problems that need to be addressed today or even yesterday," Savundranayagam said.

"I wanted to deal with the most vulnerable. When you compare cancer caregivers to those who care for people with dementia, the latter have worse scores and higher risks of mortality. Part of the reason is that with cancer you can still communicate and maintain the relationship. With dementia, it's so much more challenging to have the same relationship."

Spouses in long-term, committed relationships face these challenges, but so do adult children, who may suddenly be in the position of feeding, dressing or bathing their parent with dementia. When that relationship changes, communication strategies have to change with it.

"How can we communicate in a way that makes it easy for the person with dementia to engage - whether it's verbally or non-verbally? Touch. Eye contact. Gestures. It's about relationship maintenance. What are the strategies that work, that don't work? We, as researchers, may know, but caregivers don't necessarily know," she said.

As an example, Savundranayagam said caregivers might think speaking slowly is an effective communication strategy for patients with Alzheimer's. Often, however, the opposite is true. "If you have dementia, it takes a lot of effort to remember what people are saying to them. The longer it takes for you to blurt it out, the harder it is for them to remember. It's not about slowing it down - or speeding it up either - it's about keeping it at a comfortable pace."

In addition, Savundranayagam said the gold standard is ensuring patient communication is person-centred. Just because a communication strategy is effective, she argued, doesn't mean empathy and understanding aren't involved. "Validate somebody. Help facilitate. Work together to help patients maintain their independence and support interdependence."

While most of her work has focused on the impact of communication challenges on family caregivers, Savundranayagam is also looking at ways to aid personal support workers. In partnership with McCormick Dementia Services, she recently developed and completed a six-week communication training workshop for personal support workers who care for patients with dementia.

"Our rationale is that people with dementia are a vulnerable population, but the other vulnerable population are personal support workers in home care - they do the hardest work, get paid the least and don't have the best training," Savundranayagam said. "At least if you work in a nursing home, you have people to talk to. When you're in home care, you're just on your own. Let's go and do the work with people who really need it the most."

She hopes to eventually follow up with personal support workers in the home to monitor whether communication has actually changed based on the training and simulations her team has provided.

Savundranayagam is also currently working with Communication Sciences and Disorders professor J.B. Orange as part of the Canadian Consortium on Neurodegeneration in Aging (CCNA) to investigate the impact of multi-sensory impairments - hearing and vision - on those with dementia. The national, longitudinal study will provide data for an evidence-informed approach to communication strategies.

"Those problems are going to become more common as the population continues to age. You've got the cognitive and language problems from the dementia and then you superimpose sensory issues, such as hearing and vision challenges, which makes it even that much more difficult," said Orange, who has been studying communication and dementia for more than 25 years. "Internationally, there isn't anyone working on dementia communication and single and dual sensory areas. In that regard, the research we're doing is probably leading-edge."

Orange finds this particular field compelling not only because of its complexity, but also because of the number of individuals affected by communications challenges. "Three-quarters of a million people in Canada have dementia. If you take that person, plus a spouse and two others who are directly affected by the disease, you have three million people - a little less than 10 per cent of Canada's population - directly affected by this disease.

For Orange, communication is the key, since often difficult behaviour with Alzhemier's patients is correlated with communication problems. And communication problems contribute to caregiver burden.

"How do you care for somebody? By doing tasks for them. By communicating with them. We are often attuned to people's 'cant's' and are too impairment based. It's easy to be the critic. At the same time, you want to say: 'What can they do?' 'What retained abilities do they have?'

"The person is still there. Even in the late stages of the disease. They just have great difficulty getting the words out. We sometimes fall into the trap of treating them like they are passive and not really there, but what is telling in this late stage is there are these islands of coherent language. We just need to find the right window in which to look at them."



"How can we impact the way we care for older adults and their caregivers? How are we doing this care as we wait for a cure to come?"


"Weathering the Tsunami" written by Krista Habermehl
Communications Specialist (Alumni and Development)


Parts of Speech


Unlike the changes that occur as healthy adults age, the language and cognitive changes observed in people with Alzheimer's disease are markedly different.

In the early stages of the disease, people begin to lose word recognition, even have difficulty recalling specific words. This "anomia," according to Communication Sciences and Disorders professor J.B. Orange, is even more evident with nouns and adjectives than verbs or adverbs, because of where those types of words are processed in the brain and how the disease affects certain parts of the brain as it progresses.

"There's lots of evidence that indicates people with Alzheimer's disease have great difficulty accessing their mental dictionary and semantic system. The retrieval of those words and concepts is more problematic for certain classes of nouns and adjectives," Orange said. "If you were to try to help someone with Alzheimer's disease remember someone's name and you said, 'You know, your cousin from Newberry. Was it Marilyn or Jane?' Their response might be 'I don't know.' That's different than if you said that to someone who was aging normally, who would most likely respond with: 'Oh yes, Marilyn.'

"It's these changes in word access, word retrieval and word recognition that mark and herald the onset of Alzheimer's disease - quite different than the normal aging process."



J.B. Orange

As Alzheimer's disease progresses, changes occur in reading and listening/auditory comprehension for complex language structures, such as figurative language, metaphor and simile, which require more cognitive integration.

"As an example, if I said, 'I saw your friend at Metro. She gave me the cold shoulder,' there's the concrete interpretation that maybe you were in the frozen food section or the air conditioning was on. The connotative, extra and added meanings to words are more problematic in the early stages of Alzheimer's disease. People tend to go to the more denotative, concrete and literal interpretations. We see that with regards to complex reading and listening," he said.

Most people are aware, at least in the early stages of Alzheimer's, of the difficulties they're having - they just aren't sure why. Spouses and family members might dismiss the changes as part of the normal aging process.

Orange emphasized they are not.

"We know, up until the age of 70 to 75, people's vocabularies expand. Your understanding of new words - and the development of new words - in your mental dictionary expands. That's one of the robust natures of aging and language," Orange explained. "If we see these word-finding difficulties prior to the age of 70, you have to begin to think it's not part of the normal aging process."

In the middle to moderate stages of the disease, word finding difficulties become more blatant. Spoken, written and gestural (expressive) language becomes semantically impoverished, meaning there are fewer nouns, adjectives, verbs or adverbs used. Words like "this," "that," "those," "things," "stuff," tend to increase and it becomes more difficult for a listener to understand what a person with Alzheimer's disease is trying to say. Repetition becomes more evident, and sometimes the person becomes disinhibited, making off-colour jokes or rude comments.

"They aren't recognizing the context in which they find themselves. The social forces that otherwise create cues to signal that you can't say those things aren't recognized anymore," Orange said. "We also begin to see the emergence of more problems in social communication with multiple partners from a whole host of factors. It becomes a paradox, because caregivers want to bring them out and keep them socially active - but it's about finding sweet spots of appropriate stimulation, without being overwhelming."

In the late stages, all of the above issues are exaggerated, leading some people with Alzheimer's disease to shut down and not say much at all. All of these problems conspire, leading to communication breakdown between caregiver and patient, causing an undue amount of stress and frustration for both parties.

There are a number of strategies caregivers can employ to improve communication, Orange said, it's just about learning which work - and which don't.

"People are adopting strategies that aren't productive. We need to teach significant others how to adjust their grammar and syntax so they don't create problems. People think speaking loudly and slowly is helpful, but there's plenty of evidence showing that can be problematic," Orange said. "Get people's attention. Minimize noise, be it visual, auditory or olfactory. As dementia advances, their ability to inhibit external stimuli diminishes. Choose topics that are relevant, such as topics from

their episodic memory (time- or event-based memory) or memories in early to mid-life they have rehearsed thousands of times. Choose topics that might be engaging for them. Go back to a familiar context."

For Orange, who has studied communications issues related to dementia for more than 30 years, there is a personal feeling of fulfillment from solving problems related to progressive, degenerative conditions.

"It's evolving; it's exciting. Some people might find it dull and boring, but 25 years ago I never would have said people with dementia can learn. We now know they can. There are all sorts of techniques to enhance people's abilities and bring out strengths and weaknesses. We just have to find the right keys to unlock the treasure chest of abilities that are there. We just need to tap into it. I'm fascinated by it - my two favourite words are 'why' and 'depends.' I'm a context guy.

"The person is still there. Even in the late stages of the disease. They just have great difficulty getting the words out. We sometimes fall into the trap of treating them like they are passive and not really there, but what is telling is that there are these islands of coherent language - and then they fall back into nothingness or jargon. We just need to find the right window in which to look at them."



Most people are aware, at least in the early stages of Alzheimer's, of the difficulties they're having - they just aren't sure why.


"Parts of Speech" written by Krista Habermehl
Communications Specialist (Alumni and Development)