The Canadian National Dementia Strategy

Last week we presented an infographic to show you the impact of dementia on Canada. Thankfully,  on June 22, 2017, Bill C-233 received Royal Assent and became law in Canada. This law, “An Act respecting a national strategy for Alzheimer’s disease and other dementias” mandates that all provinces and territories across Canada work together to develop and implement a national dementia strategy that addresses 7 key areas. By mandating the implementation of this national dementia strategy, Canada has ensured that something actually gets done to support all people affected by dementia.

The seven key areas that must be addressed include:

  1. Develop national objectives to decreased suffering and reduce the burden of dementia on society;
  2. Encourage investment in all areas of research related to dementia;
  3. Working with other countries to combat dementia (because dementia is a global pandemic);
  4. Nation-wide development and dissemination of diagnostic and treatment best practices;
  5. Nation-wide dissemination of best practices on how to improve quality of life for people living with dementia and their caregivers achieved through care integration, chronic disease prevention and management, community services, and family supports;
  6. Supporting the development and dissemination of information on prevention, management, and early treatment; and
  7. Create recommendations and guidelines for best practices in care delivery and daily programming.

And it doesn’t stop there. By June 2019, and every year after that, the Minister of Health must give a report on how the National Dementia Strategy is doing along with any new recommendations.

Dementia pandemic

So what does all this mean to you?

It means that you and your family will be receiving better care and support. It means that we will start coordinating with other countries who are leading the way in dementia care (such as the Netherlands), and learn from how they have successfully, and not so successfully, supported their citizens who are affected by dementia. It means that we should be able to reduce the currently projected cost of dementia in dollars, but also in its cost to productivity and personal stress.

It means that Canada isn’t ignoring you. It means that Canada has realized that Alzheimer’s disease and other dementias cause a lot of pain and suffering. It means that Canada believes you shouldn’t go it alone.

With projections estimating a rapid increase in the number of people living with dementia and subsequent cost to Canadian society, it is imperative we launch a coordinated attack. In the end, this National Dementia Strategy will improve the quality of life of everyone affected by the disease.


Next steps: Funding. It’s all fine and dandy to design a fantastic dementia strategy, but we need funds to put it in place. However, the strategy isn’t finalized yet, so until then, we won’t know how much money we’ll need to implement it. Until then…

Advertisements

Am I Selfish?

By Eleanor Pineau

Family caregivers of someone with dementia have a tough job. These Heroes are essentially on-duty 24/7. They direct not only their own lives, but the life of the person with dementia…to an extent. They are in-charge of personal care (i.e., bathing, toileting, grooming, etc.), meals, socialization, finances, housing – anything that goes into “LIFE,” falls on the family caregiver.

Family caregivers often become overwhelmed and stressed out. And we all know what stress can do to us! Stress breakscaregiver us down from the inside out; it’s with us almost 100% of the time; it makes us eat; it makes us stop eating; it makes us sleep non-stop; it makes us stop sleeping; it makes us gain weight; it makes us get physically sick. Stress can be traced to the root of almost all physical ailments, and absolutely worsens any physical or psychological illness.

After all family caregivers do, I still get asked: “Am I selfish?”

Am I selfish if:

  • I want to take a bath?
  • I want to go to the gym?
  • I want to go on a vacation?
  • I want to see my friends?
  • I don’t want to do it anymore?

These questions, among others, are completely normal. So what’s the answer?

You. Are. Not. Selfish.

It’s completely normal to want to take a bath, go to the gym, go on vacation, see your friends, and take a step back from caregiving. It’s also completely normal and even HEALTHY to DO those things! Do th
em!

If you find fulfillment, or a sense of pride, duty or accomplishment in caregiving, then do it. But know that you also need to take care of yourself. Helping someone in their time of need is one of the greatest gifts yo
u can give that person, AND yourself. But you shouldn’t go into caregiving every day with dread or feeling dispirited. So how do you stop or prevent feeling this way?

Take. Care. Of. Yourself.

I know it’s easier said than done, but go take a bath, go to the gym, go on vacation, see your friends, and take a step back from caregiving.

There are many community resources that can help you along the Dementia Journey. Meal delivery services can save you time so you have more time for yourself. Respite care is great because you can be assured your loved one is safe and well-taken care of while you can go see friends, go to the gym, or go on that trip you’ve been longing for.

It is incredibly important to take care of yourself so that you can continue to care for your loved one, and so that you don’t feel your life is on hold. Your life is NOT on hold. You are growing, developing, learning, and changing every day. Though you may not feel it all the time, you are tackling and overcoming one of life’s greatest challenges. You Are Thriving. Stay strong and continue to thrive by balancing caregiving and self-care.

Because we NEED YOU.

Please share in the comments your tips and tricks for making the Dementia Journey a little easier so you can put time into self-care 🙂

Steps to Remember your Daughter

By Eleanor Pineau

We all know: Exercise is good for you. Go for a run. Take the Stairs. Lift some weights. Walk or bike, don’t drive.

But how important is exercise really? And how important is exercise to someone that has dementia?

If there was a magical pill for all of our aches and pains, it would be exercise. The number of things exercise prevents AND treats is, well, EVERYTHING. High blood pressure? Go exercise. Depressed? Go exercise. In pain? Go exercise. Afraid of getting dementia? Go. Exercise. Name a condition or symptom, and exercise is bound to have a positive impact on it.

A group of elderly people exercising together on balance balls

Exercise in older populations is incredibly important to maintain independence, dignity, and quality of life. It is also the most important intervention to prevent falls. This is extremely important as falls is a predictor of loss of independence and death. These factors remain applicable to persons with dementia.

People often think that once someone is diagnosed with dementia, that all is lost, and exercise is not needed. Because, well, “they’re not all there anymore.” Right?

Wrong.

Persons with dementia need to exercise. Oftentimes, these people are also quite capable of physical activity. They need to exercise in order to prevent falling, control other comorbidities/diseases like heart failure, osteoporosis, arthritis, high cholesterol levels, and so forth. They also need exercise in order to prevent depression, delirium, and to help them reduce any pain.

Another thing exercise helps with is drugs. Unfortunately, many people with a cognitive impairment like dementia, take multiple drugs. Taking too many drugs is very dangerous, especially in someone with dementia. Side effects or interactions between drugs are very likely, and these can cause heart attacks, accelerated cognitive decline, and even death. Exercise helps to fix the reason they are on a drug. For example, exercise helps with cholesterol levels so now they don’t need to be on that cholesterol medication.

Many people with dementia are put on anti-psychotics because they have sedative properties. These sedatives are used to sedate the person with dementia so that they no longer yell, wander, or show physical aggression – these are “problem/responsive behaviours” aka “personal expressions.” These drugs actually cause greater cognitive decline, and physical decline – so independence is reduced. In lieu to these drugs, we should be prescribing an exercise regime. Oftentimes, the reason why someone with dementia is yelling, wandering, or being physically aggressive, is because they are in pain, they’re agitated, they’re bored, or they need some physical stimulation. Well you guessed it, exercise cures these!

Exercise!

A lot of people look for a cure or for something that will slow the progression of dementia. And you guessed it again. So far, the only thing that holds promise to prevent or slow the progression of dementia is exercise! Exercising increases blood flow to the brain which increases nourishment and waste removal. It also enhances neurogenesis, or neuron growth! (So in dementia, neurons are constantly being destroyed, and this is why we see memory loss, poor judgement, poor communication, etc. But exercise stimulates the growth of neurons, and keeps neurons healthy which prevents their destruction!) So in essence, exercise slows the rate of dementia, which keeps the person happy and healthy for longer! They can remember more things throughout the day, they have better judgement, and they can find the words they’re looking for!

Exercise!

But where to start? You have a couple of options:

  1. Exercise at home on your own
  2. Attend a fitness class in the community
  3. Access personal training

 

  1. Exercising at home on your own

If you and your loved one prefer to exercise at home without any expert advice, you need to take into consideration a couple of key things. First, make sure that your loved one with dementia is wearing comfortable, proper-fitting shoes. This will reduce the risk of falling. Second, make sure your workout space is clear of debris and you’re in a well-lit room. Again, these will reduce the risk of falling. Third, make sure you use proper equipment and safety measures. For example, you should consult a personal trainer or physiotherapist to ensure that you aren’t doing any movements that are contraindicated by a medical condition. If you have osteoporosis, you should not be doing any twisting motions with your back. Consulting a personal trainer or physiotherapist will undoubtedly ensure your safety. Lastly, the most important thing is to have fun! So turn up your favourite music and get your body pumping!

  1. Attending a fitness class in the community

There are lots of exercise classes in the community. You can find them at gyms, churches, or senior centres. Unfortunately, most are not tailored to people with dementia. There is however one program – Minds in Motion – that is delivered by the Alzheimer Society. This exercise program is catered to persons with dementia. It runs once a week for 8 weeks in a community recreation centre. Participants engage in 45-60mins of physical activity, and 45-60mins of mentally stimulation activities.

To find out more, follow this link: http://www.alzheimer.ca/en/on/We-can-help/Minds-In-Motion

  1. Using a Personal Trainer

If you are looking for more one-on-one training, you can access a personal trainer who specializes in dementia. This is a great way to get specially tailored exercise programs that are perfect for you! Because these programs are tailored to you, the time spent exercising will give you the most bang for your buck. You will maintain your independence for longer, be able to get up off the toilet easily, walk to the grocery store, and so much more. Personal training can be offered in a facility or in the home, whatever is preferable to you. Looking for a personal trainer who specializes in dementia in the Waterloo-Wellington Region? Contact MemoryFit at 905-299-1206.

 

So take that magic pill, no matter which way you do it, so you can live independently, maintain your memory, language skills, judgement capabilities, and have fun with your family!

 

 

 

 

 

 

Who’s Caring for Mom? – Part 2

By Eleanor Pineau

Last week I wrote about an incredible PSW who truly takes pride in her work and shares her love with all she meets. Our interview covered topics such as: (1) how she came to be a PSW; (2) what the general work day of a PSW consists of; and (3) specific topics relating to dementia. In this part 2 of the article, we will discuss the topics relating to dementia.


 

And so the interview continues:

Tell me about the experiences you have with families who have a loved one with dementia.

“All families are different and unique.” Maryanne gave examples of the different types of families. Some families are always present, making sure their loved one ate, are dressed, engaged in activities, and so on. Some families even request staff to show the resident their photo when they go away. I think that this is interesting for 2 reasons. Why do they Familywant their loved one shown a photo of them? Is it because they don’t want them to forget who they are? Or is it because they want their loved one to know that they care and love them and will be back? Or maybe both.

There are also the families who complain. But Maryanne believes that most of the time, these families just have a different way or a difficult time expressing their love for someone. She does however admit that there are the complainers and whiners.

And then there are the families who do not come at all.

The emotions families experience when a loved one falls ill with dementia are numerous and often conflicting. But what’s interesting is that so many different emotions can cause the same reaction. For example, a family member might visit their loved one because they truly love the person; they may visit them due to a sense of duty; they may visit due to culture; they may visit them because they feel guilty; etc. Although these emotions differ, the person still visits. However, you may be able to imagine that the atmosphere of the visit might change depending on the driving emotion.

I then asked Maryanne more specifically about families and their understanding of dementia.

“Most families understand what’s going on with their loved one with dementia but they don’t accept it! They know it’s dementia, and that they’re losing this and that, but they come to you and ask ‘why is my mom doing this, or doing that?’”

So if families understand what’s going on, but aren’t willing to accept it, how can we help them?

“I think they need support in order to accept it. Unfortunately the PSWs don’t have the time to help the families.” Having access to quality information and support at every stage of the dementia journey is essential to the emotional, physical, psychological, and social health of family members and family caregivers. Families should know that “your mother is at this stage and she will progress to this level, and then that level; her functions will be this, and the care will be that. They just bring them there, with no education or support. They need someone with the expert knowledge and someone with the experience to help them through it”

So where do families access this information and support? Do they have to do everything on their own in such a stressful and overwhelming time? Are the services adequate? You tell me in the comments below.

My next question asked whether she had some tips for people who are caring for someone displaying a behavioural problem.

Immediately, Maryanne replied with:

“Trust your instincts, use unconventional ways of caring for the person, and use an open mind.”

Maryanne told me a story about a man who had a very dirty mouth and would ask for sex every time a female PSW would walk into the room.

“So I walk into his room to get him up and ready for the day and he asked me for sex. I said ‘we will have sex after we go to the bathroom.’ He said ‘really?!’ And I said ‘yes, I promise.’ He got right up and went to the bathroom. For everyone else, he would fight them and wouldn’t go to the bathroom. They would have to do everything for him in there. As soon as I promised him what he wanted, he did it all, and I didn’t even have to help him. It was great. After, he forgot about the sex.”

What is absolutely incredible about this story is the feedback from the daughter. She told Maryanne, with tears in her eyes, that this is the first time that a PSW has not complained about her dad.

So you can see, that when caring for someone who may not be acting in the most socially appropriate way, that it is crucial to trust your instincts, use unconventional ways of caring, and have an open mind. After all, it’s not about you. It’s about making sure the person you are caring for is safe, happy, and has the best quality of life possible.

Another story Maryanne shared with me was about a man and wife living in the same suite, but in different bedrooms. The man would always wander at night and this made the staff very anxious about his safety and wellbeing, as well as the safety and wellbeing of the other residents. Maryanne analyzed the situation. What were the usual arrangements for this man and woman before they came to the home? And then the most obvious solution came to her head, that oddly enough, couldn’t be seen by any of the other staff. They rearranged the suite, put both beds in the same room, and now they shared a room at night. He never wandered again. You see, what was happening, was the man would wake up in the night, see that his wife was not beside him, so he would get up and go searching for her because he wanted to make sure she was ok. Now when he wakes up, he sees that she is right there in the bed beside him.

Again, in people with dementia, you need to look at what’s normal?! What were their routines before the disease? The solutions then come very easy.

To conclude our interview, I asked Maryanne if there was anything else she’d like to tell me. She left me with one striking statement:

“We care for animals, but we don’t care about the elderly. What does that say about us?”

 

 

Who’s Caring for Mom? – Part 1

By Eleanor Pineau

I recently had the absolute pleasure of interviewing a personal support worker (PSW for short) who has worked in home care, in assisted living, and in nursing homes. The kindness, love, and passion that emanated from her, was something so moving that it gave me hope and joy for the profession, and for older adults residing in nursing homes. Maryanne is a different kind of person and PSW. She is someone that sees the good in everyone, and even when residents spit, curse, or throw things at her, she remains devoted, loving, and compassionate. I am astounded and overjoyed by the love Maryanne exudes.


 

During our time, I asked Maryanne a couple of things:

Can you tell me in general, what you do for a living?

Maryanne is a PSW, and is currently working night shifts (11pm-7am) in a nursing home. Since it is night time, residents should be sleeping which leaves the PSWs time to do

senior woman with home caregiver

laundry and make sure all supplies are in order such as towels, and personal hygiene products. Every 30 minutes, Maryanne will check on her 25 residents. She ensures everyone is safe, where they should be, and if they are incontinent (which means they do not have control over their bladder, and sometimes bowels), she will change and wash them. Just like when you care for a baby, you cannot leave them wet or they will get skin sores. All care is done using a “Gentle Care” approach which means taking your time with the resident, not rushing, communicating with the resident what you are doing, and most of all, giving the resident choice – empowering them – with what they want to do, how they want to do it, or what clothes they want to wear.

I then asked Maryanne,

How did you start on this career path or what made you choose to go into this industry?

“I always loved the elderly. Back home, when my grandmother got sick, I gave up my job to be with her.”

Maryanne says that caring for older adults is such a rewarding experiencing and that she gains personal gratification every day. She makes it her goal, to go into the nursing home, and make people happy. She jokes, plays, and talks with the residents whenever she can squeeze in some time in her busy schedule.

She also learns something every single day. Maybe not textbook knowledge, but real-life, applicable knowledge! Imagine that! Learning something from someone so old? (*sarcasm*)

Maryanne told me a couple of stories where she learned something from a resident:

“One lady said when you take the bus, always have something in your hands (like a book), so you keep busy and don’t get into trouble. Keep your hands busy! When you’re busy, you don’t think of sad thoughts, or pay attention to others. I also learned how to knit.”

The most opportune place to learn life lessons is in a facility that houses older adults. After all, they are the ones that have lived through war, famine, and a depression.

The next question went like this:

Tell me about your work with people who have dementia?

“When you’re working in a locked unit, which is the dementia unit, there’s no such thing as ‘routine’! They’re walking around, going through someone else’s room, and taking things from other residents, so you constantly must be manning the unit. All closets are locked too so people can’t get into other peoples’ things. They lie down on someone else’s bed, and we allow them to lie down there because some are tired from walking around the whole day and they don’t recognize it’s not their own bed. If you can redirect them to their own room, then of course we do that. But if it’s an aggressive person, then we let them lie down for a bit and come back later to redirect them.”

I think it is important to highlight that working with someone who has dementia can never be a routine. And this applies to all settings – in the home, in assisted living, in retirement homes, and in nursing homes. It is of utmost importance to be with the person, in that moment, when caring for someone with dementia. If they say someone is standing there (even though no one is), you agree and play along…as long as it’s not hurting them or someone else, and they’re not in danger. This is called Validation Therapy. It literally just means that you live in the moment, in their moment, all the time.

Maryanne also noted that everything needs to be individualized for each person with dementia. For example,

“One [resident] has a doll that she believes is her baby and that she is a new mother. When sitting in the living room, she gets agitated and starts rocking back and forth. But as soon as you give her the doll, she calms down. She really takes care of it. The doll, I think, gives her a sense of purpose and security.”

Caring for someone with dementia means you get to be a kid again. You get to experience their experiences, when they were 60, 43, 22, and even 6 years old. It is a privilege and an incredible experience to live someone else’s life and to learn, so intimately, about that person. When someone with dementia re-lives their teenage years, and you are using validation therapy, you get to be a teenager again too. Full of whit, life, joy, and without a care in the world. Remaining positive and upbeat when caring for someone with dementia makes the adventure of caring so much more fun and rewarding.


From this point of the interview, we can see what excellent care looks like. We can see that someone who is caring for an older person, with or without dementia, needs to show compassion, needs to be patient, needs to be understanding, and most of all, needs to love – regardless of profession. Maryanne is the best example I could have found for going above and beyond caring for older adults. She truly sets the best example for all PSWs, nurses, physicians, family caregivers, and all healthcare professionals, on how to care for someone.


 

Part 2 of “Who’s Caring for Mom” will be released shortly.

Photo from: http://www.nahb.ca/blog/tag/psw-courses 

 

5 Unusual Things to Remember when Caring for Someone with Dementia

By Eleanor Pineau

Everybody knows the devastating impact dementia has on life – not only on the person who is diagnosed with dementia, but on their family and friends too. Unfortunately, the number of people with dementia in Canada is increasing every year. This means that more and more people with dementia need to be cared for, and most are cared for by their families in the home – at least in the beginning. This is often a daunting task for families. Families will encounter many negative experiences such as role transitions, conflicting mom-daughter-hugemotions, stress, and burnout. They will also experience positive emotions such as happiness and joy from taking care of their parent and giving back for all the years their parent spent rearing them. But how do you go from a lawyer, construction worker, banker, salesperson, or electrician to a caregiver?

When your loved one is diagnosed with dementia, there are 5 key caregiving factors that you NEED to keep in mind.

  1. Understand. I think the most difficult moment in caring for someone with dementia is when they no longer remember who you are. YOU! The child they bore; the son that has been with them for 50 years; the daughter they played with for hours in the yard; the spouse that has loved them since that first touch. In this most debilitating event, you need to remember: they love you. They may not recognize your face or remember your name, but they love you. They chose YOU to be in their life. They chose to take care of YOU. They chose to be with YOU on holidays, soirees, or just a Thursday afternoon. Getting to know why your loved one with dementia is forgetting faces or names is important to you, because this will enable you to understand that there are still ways of reminiscing and connecting with them. For example, play a song that you both used to sing or dance to; cook a favourite meal you always shared; or bring an old blanket you used to cuddle up with. The parts of the brain that are responsible for remembering names and faces are often affected by dementia before the parts of the brain that are responsible for music, smells, and touch. In people with dementia, it can be very helpful to use all their five senses to stimulate memories that are tied to those senses.

Try out this tip and comment below.

  1. Be socially engaged. Both you and your loved one with dementia NEED to remain socially engaged. New research has shown that detrimental effects of being socially vulnerable and lonely. Such effects include: depression, anxiety, weight gain, delirium, and even death. Some tips to get socially engaged for the person with dementia are: attending day programs offered in your community; maintaining friendships through phone calls, letters, emails, and visits; playing games; and socializing with family and grandchildren. Some tips for you to remain socially engaged are: keep going to work; make sure you make time for yourself and your social life; go to the gym; and make sure you go to those parties/get-togethers. I know it’s difficult to care for someone with dementia and take time for yourself. You might feel guilty, and that you can’t trust the person that is caring for your loved one while you are away. But trust me, if both of you are remaining socially engaged, both of your lives will be much better for it. Social activity reduces stress, increases happiness, and reduces the risk of depression! So get out there, make those phone calls, and be social!

 

  1. Keep physically active. Just like maintaining social health, both your loved one with dementia and you need to be physically active. Physical activity promotes independence, dignity, and quality of life in older adults and in yourself. It also maintains cognitive function which means it might slow the progression of dementia. Exercise will also prevent falls which are one of the leading causes of hospitalization, lost independence and death in older adults. Exercise will also manage all other chronic conditions you or your loved one are experiencing which means less medications and trips to the doctor. Lastly, exercise prevents and treats depression and anxiety, and it acts as a natural pain killer.

 

  1. Know the services available to you. Community services available to people caring for someone with dementia vary by city, province, and country. Getting to know the services that are available to you is paramount to your success in caring for your loved one with dementia, and yourself! Such services often include: day programs, respite care, home care, physical care, companionship programs, meal programs, medication management, caregiver support programs, and so much more.

 

  1. Educate yourself. Knowing the in’s and out’s of dementia will enable you to be fully prepared for each step in the dementia journey. Understanding what dementia is, what causes dementia, the prevention and treatment techniques, and what to expect in the future will greatly help you and your family thrive on this journey.

Conclusion: It is essential to: (1) understand, (2) be socially engaged, (3) keep physically active, (4) know the services available to you, and (5) educate yourself in order to thrive when caring for someone with dementia.

Following these 5 essential tips will truly make you and your loved one thrive during your journey. Try out these tips and post your comments and experiences below.

 

photo from: http://singlemindedwomen.com/women-relationships/duchess-digest-making-mothers-day-memorable/