dementia

Showing Vulnerability to Build Awareness

January 8th was the official launch of the Alzheimer Society of Canada's January Alzheimer Awareness campaign, I live with dementia. This is especially exciting because I have the honour of being featured in it!

This amazing feat all started when I reached out to the Alzheimer Society of Canada to become a media spokesperson in June 2017. The Communications Director of the Society, Roseanne Meandro, has worked with me since to help me get my story out there.

In September, Ramp Communications contacted me to do a photoshoot for the campaign. It just so happened that the photoshoot landed on my birthday, so I felt very special. David Tam, the Creative Director from Pear Tree Photography managed to get the shot used for the campaign right off the bat.

I continued to work with David Brouitt, the Creative Director of Ramp Ad, to refine my story, which was set to be featured as part of the campaign.

For the remainder of 2017, the campaign was under embargo, so we couldn't talk about it publicly. 

But now the word is out there and I am so thrilled to get a chance to share! My hope is, and has been since I decided to become a public advocate for this cause, that by allowing myself to be vulnerable, it will resonate with people.   

I want to personally thank all of the people who made this campaign possible, and  I encourage you to start a discussion about dementia using the #ilivewithdementia

Read my story. 

Christmas with Dementia

With only seven days left until Christmas, I am finalizing my plans to go and visit my family in Edmonton, Alberta, for the holidays. 

My brother and I used to have an annual tradition where we would take my mum out of the continuing care home for an overnight visit on Christmas Eve and wake up on Christmas Day to open presents as a family. I really cherished this tradition as it was one of the only times a year my mum willingly came out of the home.

Each year was stressful; for my mother, myself and the rest of the family, but the last few years became too much to bear. We decided to alter our tradition to bring brunch to the home and eat together as a family.

It is important to be adaptable with this disease as each day is different. Even if you have plans for how to pass the time, be it baking or sharing in conversation, the best you can do is to involve the person in a way that's not stressful, so that they feel included and needed.

A question to ask is how can the person with dementia contribute to this celebration? Remember, they’re doing the best they can and they still love you as much as they always have.

A few things that I have learned over the last 10 years of caring for my mum during the holiday season is:

  • Be patient to allow person with dementia to open presents without feeling rushed. Offer help if need be, but don’t try to hurry them along. 
  • Noise can be difficult to cope with for the person with dementia.  Remind friends and relatives  to keep the noise down, or try to keep one room in the house a quiet zone, where TV, music and noisy games (or people) aren’t allowed. 
  • Tell loved one if visitors are stopping by to minimize stress. Also, explain to visitors that they may see a difference in their behaviour or demeanour.
  • Don't about making Christmas perfect. Try to keep it real, and if things go wrong, keep your cool and maintain perspective. 

Here are some additional tips for supporting people with Dementia at Christmas.

Most under-recognized public health threat

According to a report published by Statistics Canada in 2014, Dementia is the 8th leading cause of death in Canada. It is the only cause of death among the top 10 without a way to prevent it, cure it or even slow its progression.

Too often Alzheimer's is treated as a issue that only impacts people that are aging, but I can attest to the fact that that is simply incorrect. This disease has far reaching impacts and the burden will continue to deepen.  

According to the Alzheimer Society of Canada, as of 2016, the combined health-care system and out-of-pocket caregiver costs are estimated at $10.4 billion per year. By 2031, this figure is expected to increase by 60 per cent, to $16.6 billion.

In an earlier post I talked about the passing of Bill C-233An Act respecting a national strategy for Alzheimer’s disease and other dementias, making Canada the 30th Country with a National Dementia Strategy.

This is a step in the right direction, but what are we doing to help the people with dementia and their families right now? 

I want to find a way to unify us, caregivers and sufferers alike, so we can share our experiences in order to influence policy. 

Dementia is still not being seen as the epidemic that it is. The percentage of the Canadian Institutes of Health Research’s budget invested in dementia research is only 5%

A commitment to more public funding for dementia research is the best place to start.

Find out how Canada compares to these and other G7 nations in funding Alzheimer’s research.

Live in their reality

Last weekend I went to a Death Cafe gathering in my town and someone said this really profound thing that I haven't been able to stop thinking about. 

First off, in case you were wondering what the Death Cafe is, their stated objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'.

During the meeting, I brought up my mother's condition and how it is really difficult to watch her slip away and be unable to turn to her as a mother. In response, the Facilitator of the Death Cafe introduced the following concept:

Live in their reality
— Stephen Garrett

 

 

When it comes to caring for someone with dementia, it is important to understand that they are no longer living in your world. They are experiencing social cognitive, functional and mood changes that they don't even understand. 

As the disease progresses, it is crucial to react with care and compassion. If they cannot meet you in your reality, then you can meet them in theirs.

People often get really irritated and flustered when their loved one doesn't act in the way they feel they should. The more you try and correct them, the more agitated they become.

Don't take it personally. It is not them, it is the disease. 

For more information about the benefits of staying in their reality, visit The Upside of Aging blog.

 

Link Between Brain and Behaviour

There is a direct link between our brain and how we behave. This is because the brain acts as the control centre for the actions and reactions to stimuli in the environment. For a person living with Alzheimer's, the link is disrupted and the brain's messages are no longer relayed. 

It is important to know alterations in a person's behaviour can be an indication of specific physical changes to certain areas of the brain. 

The main areas of concern in Alzheimer disease:

Limbic system controls memory and emotion; it links the lobes of the brain, enabling them to connect behaviour with memories. It also controls emotion and daily function such as sleeping and eating. The Limbic system is affected early on in Alzheimer disease. 

A common example of what can happen when the limbic system is involved is that the person may not be able to find an object having forgotten where it was put. He/she may immediately assume it has been stolen. The person may become very emotional and may blame others for taking it. To diffuse the situation, do not argue, but rather suggest a plan of how to retrieve the missing object.

Temporal Lobes contains the major memory centre of the brain called the hippocampus, also part of the Limbic System, where verbal and visual memory are processed.

Verbal memories are words. Memories related to what we read, say or hear, whereas visual memory is what we use to recognize objects, faces and places, to guide us around our environments.

The Temporal Lobes also control new learning and short-term memory. We know the Temporal Lobes are affected when the individual begins to experience lapses in short-term memory. That is to say, something that happened five minutes ago is quickly forgotten. There is no ability to retain memories of the recent past and therefore the person lives in the present moment. What is seen now is reality.

For example, if you have been for a visit and left, the person that is beyond the early stage of the disease will have no memory of your visit to them. You were never there, because you are not there now. The person will no longer be able to connect time and place to the present reality.

The person may lose vocabulary skills and have difficulty understanding what words mean. He/she may go out to a familiar place and then not know how he/she got there or how to get home again.

Damage to the temporal occipital part on both sides of the brain may also cause Agnosia, that is not recognizing familiar faces, objects or places.

For the person with Alzheimer disease, losing the connection to familiar faces must be terrifying. And for caregivers, this can be one of the most heart breaking symptoms of the disease; the moment when their loved one no longer knows who they are.

A useful tip is to have photos of special people prominently displayed with their names clearly shown. This can be used to help the person reminisce about special times with people who are important to them.

The condition also applies to objects. The person may no longer recognize a familiar object or its purpose. For example, not understanding what a hair brush is for.

Part of the Alzheimer Journey is about discovering how the progressive degeneration of brain cells will impact an individual's behaviour, mood and emotions.

When supporting a person with dementia who is behaving out of character, try and look beyond the behaviour itself to discover the root cause. Sometimes behavioural changes can be a result of frustration, a sense of being out of control, or a feeling of not being listened to or understood.

Personality changes could be the earliest sign of Alzheimer's, so here are 10 early symptoms of dementia to be aware of.

Wandering during Dementia

Imagine going for a walk during the day, getting lost, and not being able to find your way back home. Or one of your loved ones wanders out in the middle of the night with no coat or socks. This is a reality the people living with dementia and their caregivers face. 

Wandering is a common behaviour for people with dementia and can occur for numerous reasons, including confusion, delusions, escape from a real or perceived threat and agitation.

It can be very scary for all involved and may lead to stress and concerns for safety.  Wandering may result in highly dangerous situations including elopement, in which the person leaves an area and is unwilling or unable to return. Six in 10 people with dementia will wander.

The easiest way to put yourself in the shoes of someone that has dementia was excellently described in an article on Fisher Center for Alzheimer's Research Foundation website.

For the wanderer himself, the experience is much like going out into a mall parking lot and not knowing where you parked—without knowing why he’s out there.
— Maria Wellisch, R.N., vice president of corporate education for Morningside Ministries in San Antonio, Texas. 

Figuring out why a person living with dementia wanders can be difficult, because each person is different. We do know that wandering is a direct result of physical changes in the brain. Research has determined that it is more common in the middle or later stages of dementia, although it can occur at any point during the disease.

The risks of wandering can be minimized through proactive steps, strategies and services.

Here are 10 ways to prevent wandering

Fighting the opposition

One of the hardest things about being a young caregiver is I often feel that my voice is not weighted the same as it would if I were older. I am not taken as seriously despite the fact I have 10 years of dealing with dementia.

There have been times during my advocacy journey when I have reached out to an organization to volunteer or join their board of directors and have been turned away. I found this was particularly the case when I tried to offer my voice, experiences and suggestions to large organizations or the government. That is one of the many reasons for this blog.

This happened to me again recently and I had forgotten what it felt like. It kinda knocks the wind out of your sails and makes you want to give up or not speak out

But after receiving an email from someone who heard my story and was touched by it, it renewed my determination to keep fighting any obstacles that will inevitably come my way.

Anytime a person speaks out or goes against the grain, they are bound to be met by opposition. However, there is nothing and no one that could stop me from channeling my experiences into effective advocacy efforts.

Here is a quote that I came across today I found really meaningful and poignant:

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy-the experiences that make us the most vulnerable.
— Brené Brown

Never stay silent!

 

Dementia diagnosis sidetracked both our lives

In an earlier post entitled Out in the Open, I talked about being interviewed for the CBC's Out in the Open podcast. It just aired on Sunday and I have been getting some amazingly positive reactions. 

People have said that the interview was humbling, wise and courageous, while others have just expressed how proud they are of me, which feels really good.

You never really know what the response to a piece like this is going to be, but I hope by putting myself out there, it will spark a conversation.

People never think this disease will impact them until it does. And by then, it is too late to have the proactive discussions about health, desires and wishes of your loved one because you are in reactionary mode and are barely trying to keep your head above water.

This disease immeasurably changed the course of my mother and I's lives, rendering us unable to have these types of deep philosophical discussions. We were both sidetracked and never really got to experience our lives the way we were supposed to at our ages.

I encourage each and every one of you to start talking to your loved ones while they are still of sound mind.

However, if you or someone in your family has recently been diagnosed, here are some key strategies to employ.

If you want to share you story or discuss what route you chose along the way, feel free to reach out.

I am here to listen.

 

 

 

 

Out in the Open

Today I was interviewed by a producer for CBC's Out in the Open with Piya Chattopadhyay about my mother's disease and my experiences caring for her.

This was a dream come true as I always wanted to be affiliated with the CBC, I just did not expect it to be in this capacity.

It was a bittersweet moment. It was wonderful to share my story as it has the possibility of touching people, but it is hard to reveal the intimate experiences of this disease and the choices I have had to make because of it. 

The interview made me feel vulnerable. It was like exposing a part of myself that does not otherwise get to see the light of day.

I realized that we, as caregivers, do not talk enough about what we are made to endure because of this disease. I am not sure if it is because of stigma or because the sheer act of discussing it brings emotions to the surface that are otherwise boiling just underneath.

I hope that through this small act of bravery, I will encourage others to speak up and join the discussion.

Our voices and experiences have the power to make a difference.

There is no time like the present to take action.

 

 

With Dementia, A Cup Of Tea Is Not So Easy

My family is of British heritage so having a cup of tea in my house growing up was customary. Unfortunately, I am not sure if I tasked my mum with conducting this tradition today, she would remember all the steps required to complete it.

That is because a seemingly menial task, like making a cup of tea, is actual a complicated series of activities undertaken by the brain to turn a simple idea into a completed action. Different parts of the brain have to work together to control thinking, learning and remembering. 

The brain has 100 billion nerve cells (neurons). Each nerve cell connects with many others to form communication networks. The networks are responsible for the way the brain's messages are relayed and form the basis of memories, thoughts and feelings.

For someone suffering from dementia, amyloid plaques and neurofibrillary tangles deprive the neurons of oxygen, rendering them unable to communicate, and eventually leading to the death of the nerve cell. As the nerves cells die, the brain shrink resulting in simple tasks in daily life like brushing one's teeth becoming too convoluted. 

A simple example from daily life that shows how functions controlled by different parts of the brain work together is the task of making a cup of tea.

First you have a thought, I feel like having a cup of tea. Now a whole series of activities have to happen in different parts of the brain before you can enjoy that cup of tea.

The brain has to:

  1. switch on your motor to make you get up and go to the kitchen;
  2. remember where the tea bags are stored;
  3. recognize what container looks like and understand that the label has a connection to the contents;
  4. recall and understand entire sequence of actions for making tea
    (i.e., grab a cup, locate a teaspoon, put the tea bag in the cup); 
  5. connect the visual image of the tap with the activity of running water;
  6. know the right amount of water has to be measured;
  7. know how to turn on the kettle;
  8. exercise patience while the kettle to boils;
  9. recognize when the procedure has finished; 
  10. know that the boiling water has to be poured over the tea bag and left to steep.
  11. know to remove tea bag from the cup; 
  12. remind you to put in milk and sugar if that is your preference; 
  13. tell you to raise the cup up to your mouth in order to drink; and
  14. tell the part that controls the reflex action of swallowing to function correctly.

And now you have your cup of tea to enjoy! Not as menial of a task after all.

Alzheimer's Disease affects not only the individual's ability to initiate and follow a process like this, but also the ability to recognize that a process like this if required.

So next time you go to make your morning pick-me-up, remember how lucky you are to have the mental capacity to be able to complete

To learn more about how dementia affects the brain, take a tour.