Living Well with Dementia

Home

Welcome!

In this course we will be exploring how to live a full engaged, productive, and satisfied life with dementia; in your own home and community!

If you would like to earn a “Living well with dementia” completion badge you must complete the following 3 activities:

How Person Centered am I? (Use reply box)
Healthy Brain quiz (create an account by providing email address)
Signs and Symptoms quiz

About

In this course, you will work through four units at your own pace:

The Person

Living Well with Dementia
The Disease
Tools

In each unit there will be readings, videos, and activities that you will be asked to participate in to enhance your understanding. At the end of each unit you will be given the opportunity to reflect on what you have learned. You are welcome to write your responses in the “Reply” box at the bottom of the page or write in a separate notebook to keep for future reference.

Activities will be indicated by

Readings will be indicated by

Reflections will be indicated by

Listening to audio will be indicated by

Now you are ready to start, go ahead enjoy your learning journey!

Netiquette

Netiquette: Internet Etiquette

It is important to understand that this online course is public and can be viewed by anyone and everyone. Remember that you should only share information that you are willing to share with anyone and everyone! Below are a few rules to guide you as you respond to the course activities:

Be Nice

The first rule of Internet etiquette is to be nice.
Show respect for the opinions of others, even if you don’t agree
Refrain from name-calling. Avoid saying anything negative about others.

Keep Messages and Posts Brief

Short responses will hold other’s attention

Don't Shout

Avoid using all caps in any email or post, it comes across as shouting, which is rude.

Use Discretion

Anything you put on the Internet can be there forever. Even if you remove the material, someone may have copied or saved it.
Rule of thumb to never post anything you wouldn’t want your parents, children, grandchildren or boss to see.

Protect Personal Information

Avoid adding anything personal such as address, phone number, social security number, and driver’s license information.
You don’t want to make things easy for identity thieves, burglars, and predators.

Read Before You Click "Send"

It is always a good idea to reread anything you type before clicking the “send” button.
Check for your spelling, grammar, and tone of the message.

Help Others

Offer your assistance to others that may not be familiar with online learning
Share information on proper etiquette.

Navigation

Here are some tips to help you navigate this site.

Across the top of the screen you will see a task-bar that lists each section of the course.

TRY IT:

Put your cursor over the “About” section and see what happens.

Once you get the drop down in each section you can put your cursor over the content area that you want to go to and click with your mouse. This will take you directly to that content.

TRY IT:

You will also see at the bottom of each page “Next.” If you click on this with your mouse, it will take you to the next page automatically.

Throughout the course you will see videos and audio tapes to different topics. You will just need to click the triangle and the video will play.

TRY IT:

Go to “Home” page, scroll down to video and click the to play. Enjoy Judith’s and Sharon’s video!

To participate in the activities you will be asked a question and you are to write your reply in the box provided. REMEMBER: this information is public and can be viewed by everyone!

Getting to Know You

Let’s get to know a little bit about you.

Write a brief statement about yourself, why you are interested in this course.

Complete your statement in the box below at the bottom of the page. Once completed, click on the “Post Comment” button.

Course

In this course you will work through four units:

The Person
Living Well
The Disease
Tools

Course Goals:

To demystify the fear of dementia
Provide knowledge and tools to develop opportunities to live well with dementia through voice and choice

Outcomes of this course:

Participants in this course will:

learn how to be engaged, participate and have voice in their jorney with dementia
explore components of a satisfying and fufilled life
recognize the different stages of dementia that influence the journey.
use tools to create environments that support living well with dementia.
enhance their understanding and sense of community.

You are now ready to start your learning journey.

Unit 1 The Person

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Unit 1: Outcomes

Participants will:

Explore the definition of person.

Become familiar with person-centered approach.

Recognize stigma and how it impacts a person’s life journey.

Initiate their own life story.

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Person Centered

Do you see me 2017

Click on the link above and listen to the presentation on what it means to be person centered

Activity: How Person Centered am I?

For a family and health care professional to provide meaningful person centred care they need to get to know me, my likes dislikes, wishes, dreams, etc. For example:

Even though Sharon is Scottish, she hates porridge oats, but

she loves Blues music
Personal grooming, especially her hair is really important
she loves the ocean and spending time there
she needs lots of light in her room
she does not like over use of touch (hugs)

In the reply box below or in your notebook, list five things that a carer or health care professional would need to know about you to provide person centred care? Describe why these things are important to you.

Life Story

Lived experience: A story about me

Listen to Mary’s life story. While you are listening, think about the things that would be important to know about her if you were going to provide person-centered care.

“The truth about stories is that, that is all we are”

“If we lose touch with the stories that define us and give us meaning we lose touch with who we are”

Thomas King

Activity: Getting to Know you better.

In the following activity you are asked to complete the first two pages of the attached document outlining what is important for people to know about you. It is suggested that you save and print a copy so you can share it with your family when you have it completed. You are also welcome to share a blank copy with your family and friends to complete as well.

Getting to Know Me Document

Reflection

Now that we know what being person-centered means and the importance of getting to know the person’s life history, take a minute a jot down some of the things that you have learned in this unit.

You can write in the “reply” box below or in your notebook for future reference.

Resources

Click here to access the Article by The Times 'Dementia changes everything...we either adapt or face ruin'

Unit 2 Living Well

Unit 2: Outcomes

Recognize systems that support people living with dementia
Understand environmental elements/aspects that support people living with dementia
Locate resources that can support you
Develop strategies to stay engaged in your community

Unit 2: Part 1

Jim's Story

Jim's Story Dementia Friendly Communities

Press the link above and listen to Jim talk about his journey with dementia.

Supports to Live Well

Systems that support people living with dementia

family

friends
neighbours
GP
recreation centres
senior centres
AlzBC
Handidart
day centres
peer support
churches
library's
support groups

Environmental elements/aspects that support people living with dementia

signage
natural lighting
rest areas
colors
noise
familiarity
others approach to you

Click here to access the dementia mind map

Click Full-Screen, and then click the magnifying glass to get an explanation of each support

In the “reply” box below or in your notebook, identify the resources in your community that already exist that can support you?

Built Environment

What is a dementia friendly community?

Dementia friendly communities have the power to change the way we think about living with dementia by enabling everyday services, environments and those within them to better engage with people affected by, or living with, dementia.

A dementia friendly community can be defined as a place or culture in which people with dementia and their carers are empowered, supported and included in society, understand their rights and recognise their full potential.

Taken from Alzheimer’s Disease International

Click on the play icon to listen to this presentation.

Built Environment for Dementia

Alternate Point of View

Kpu Dementia Rights

Activity:

In the Reply box below or in your notebook write down the answers to the following questions:

Should people living with dementia be identified as “disabled”? Why or why not?
Would this designation increase the stigma of being diagnosed with dementia?
Are there any benefits to this designation?

Unit 2: Part 2

Keeping Your Brain Healthy

Press the link below and listen to the tips on keeping your brain healthy

What Can You Do To Keep Your Brain Healthy?

Activity: In the reply box below or in your notebook, jot down some changes that you could make to improve your brain health.

Ways that we can provide support

Activity: click on the link below to get some helpful tips on how we can support someone to live well.

12 Top Tips: Working with People with Dementia

Hints for Communicating

Words, Images, Procedures, and Experiences that Harm

Harmful words and images:

Demented
hostile
Dysfunctional
walking carcass
Incoherent
uncooperative
Empty
difficult
Vegetative
non-compliant
Babbling
Dependent
Confused
Shells
nonhuman

Procedures and Experiences that Harm:

Unnecessary and inappropriate assessments
Being dismissed
Being yelled at or scolded
Using deception
Not acknowledging remaining abilities
Being treated like a child
Being labelled
Being excluded
Focusing on the disease
Being ignored
Being made fun of, teasing or humiliating
Being overprotected
Being invalidated
Being treated as an object
Having things done to them without explanation
Being silenced
When people don’t listen

Suggested Communication Strategies	Give an example of how you might use this strategy:
1) Remember the basics of good communication
2) Understand the person wants to communicate with you
3) Make a good first impression
4) Create an environment that facilitates good communication
5) Treat the person as an adult
6) Respond to emotional needs
7) Remember the importance of nonverbal communication- yours and theirs
8) Remember that their behaviours communicate a message
9) Do not take the person too literally
10) Use repetition to facilitate better communication
11) Do not argue or confront
12) Speak using positive language
13) Employ humour in communication
14) Be in control of the conversation
15) Don’t take comments personally

Give an example of how you might use each strategy listed above.

From: The Best Friends Approach to Alzheimer Care

bestfriendsapproach.com

Your Life-Story-con't

Activity: At this point we would like you to take out the “Life Story” that you started in Unit 1 and complete pages 3 & 4. You can also click on the link below!

Getting to Know Me Template

Healthy Brain Quiz

Activity: click on the link below to access a short, informative quiz about Healthy Brain:

Quiz Link

Reflection

Reflection: what would you suggest needs to happen to for your community to be more dementia-friendly?

Answer in the reply box below, and then click ‘Post Comment.’

Resources

Click below to access full list of resources available:

Resources for people with dementia living at home (figure out how to put document)

Click here to access resources from Dementia Centre "Outdoor Spaces"

Article

Access article here: The Dutch Village Where Everyone Has Dementia

Engagement

Access Document: Meaningful Engagement Document

Unit 3 The Diseases

Unit 3: Outcomes

Understand stage of Alzheimer disease and how it influences ones life journey
Articulate the common signs and symptoms- each journey is unique
Be familiar with Alzheimer’s disease and other related dementias
Be aware of changes in the brain with Alzheimer disease
Consider lifestyle and risk factors
Recognize the importance of early diagnosis

Unit 3: Part 1

Dementia to Me

Looking for New Ways to Solve Alzheimer's

What Dementia is To Me from Kreativity on Vimeo

Dementia

Dementia OER

Dementia Facts

Dementia Facts: In this activity you are to read the statement and decide whether you think it is Fact or Fiction.

Write your answers in the reply box below.

Did you Know?	Fact or Fiction?
1. 564,000 Canadians are currently living with dementia	Fact _____ Fiction______
2. 937,000 The number of Canadians who will be living with the disease in 15 years	Fact _____ Fiction______
3. $10.4 billion The annual cost to Canadians to care for those living with dementia	Fact _____ Fiction______
4. $293 billion The cost of dementia in 2040	Fact _____ Fiction______
5. $1000 The cost per day for elder in hospital $ 130 The cost per day for care in facility $ 55 A day for care in the home care	Fact _____ Fiction______
6. 45% The greater your risk of developing dementia if you smoke	Fact _____ Fiction______
7. 65% Of those diagnosed with dementia over the age of 65 are women	Fact _____ Fiction______
8. 16,000 The number of Canadians under the age of 65 living with dementia	Fact _____ Fiction______
9. 25,000 The number of new cases of dementia diagnosed every year	Fact _____ Fiction______
10. 56,000 The number of Canadians with dementia being cared for in hospitals even though this is not an ideal location for care	Fact _____ Fiction______
11. 1.1 million The number of Canadians aﬀected directly or indirectly by the disease	Fact _____ Fiction______

Taken from alzheimers.ca what is dementia

For answers, see next page:

Dementia Facts Answers

The answers are all facts!

Taken from About Alzheimer

Forgetfulness: Normal or Not?

Free subscription: Alzheimer weekly

Keep your Memory Sharp

Keep a routine
Organize information (keep details in a calendar or day planner)
Put items in the same spot (always put your keys in the same place by the door)
Repeat information (repeat names when you meet people)
Run through the alphabet in your head to help you remember a word
Make associations (relate new information to things you already know)
Involve your senses (if you are a visual learner, visualize an item)
Teach others or tell them stories
Get a full night’s sleep
Learn more about what you can do to maintain your brain health and strengthen your memory

Normal aging vs dementia

ALZHEIMER’S DISEASE AND OTHER DEMENTIAS ARE NOT A PART OF NORMAL AGING.

Almost 40 per cent of people over the age of 65 experience some form of memory loss. When there is no underlying medical condition causing this memory loss, it is known as “age-associated memory impairment,” which is considered a part of the normal aging process.

Activity:

In the reply box below make a list of some of the memory issues that you may be experiencing

Look at the list provided in previous page and see if the issue is normal aging or signs of something else.

If you have any concerns about you list, make an appointment with your Dr. to discuss

Activity: SAGE Test

In this activity, you can complete an early diagnosis test.

First of all, read the terms and conditions, you can download the test.

Once you have completed it, share the results with your family doctor to help you interpret the results.

NOTE: THIS TEST DOES NOT REPLACE MEDICAL ADVISE.

Download here: SAGE Test

3D's

Speed of onset
- Delirium
  - Acute/fast
- Depression
  - Slow but can be triggered by life events
- Dementia
  - Slow
Signs and Symptoms
- Delirium
  - Inattention
  - Hyperactive/hypoactive
  - Worse at night and early morning
  - Symptoms fluctuate
  - Perception distorted have delusions and hallucinations
  - Easily distracted
  - Lethargic or
  - hyper vigilant
- Depression
  - Sadness
  - Feeling blue
  - Loss of interest and pleasure
  - Lack of self care
  - Decrease in appetite
  - withdrawal
- Dementia
  - Memory loss
  - Gradual impairment of ADL skills, communication,
  - Change in behaviour
  - Slow steady decline
  - Often worse in the morning
Treatment
- Delirium
  - Treat the cause
  - Provide environmental support
  - Can resolve in hours to one month
- Depression
  - Anti-depressants
  - Cognitive therapy
- Dementia
  - Medication in early stages can slow progress in some people
  - Irreversible no treatment
Prognosis
- Delirium
  - Good if treated early
- Depression
  - Usually mood can be improved
- Dementia
  - Gradual worsening of condition until death

Adapted from: 3D's

Unit 3: Part 2

What is Alzheimer's?

To view video, click red start button, and then click the box in the lower right corner of the video to view full-screen.

Understand Alzheimer's Disease in 3 Minutes

Alzheimer's and Other Dementia

WHAT IS ALZHEIMER'S DISEASE?

“Alzheimer’s disease is a disease of the brain where abnormal proteins collect in brain cells. Alzheimer’s disease causes symptoms of dementia such as memory loss, difficulty performing daily activities, and changes in judgement, reasoning, behaviour, and emotions. These dementia symptoms are irreversible, which means that any loss of abilities cannot come back.

Alzheimer’s disease is a common form of dementia; however, there are many others. Other irreversible dementias include vascular dementia (due to strokes), Lewy Body disease, frontotemporal dementia, Creutzfeldt-Jakob disease, Parkinson’s disease, and Huntington’s disease.

These conditions can have similar and overlapping symptoms, and many of them can only be diagnosed with certainty by autopsy of the brain.”

OTHER DEMENTIAS

“Other dementias” resemble Alzheimer’s disease in that they also involve a progressive degeneration of brain cells that is currently irreversible. There are many different types of dementia, although some are far more common than others.

A small percentage of dementias are reversible, occurring as a secondary development in treatable conditions. Toxic reactions to prescription or over the counter medications are the most common cause of reversible dementia. Others include dietary or vitamin B12 deficiencies, infections, tumours, alcoholism, inflammatory states, hormonal dysfunction, environmental toxins, drug abuse, and depression.

Stages of Alzheimer's disease

IMPORTANT TO REMEMBER THAT THE DISEASE AFFECTS EACH PERSON DIFFERENTLY

Early Stage Signs and Symptoms

Short term memory loss
loss of focus/concentration
Disorganized
Taking longer with normal daily tasks
Trouble handling money/paying bills
Difficulty walking
Depression

Middle Stage Signs and Symptoms

Increase memory loss
Increase loss of focus
Does not recognise family and friends
Disorientation to time and place
Difficulty with language and problems with reading, writing and numbers
Personality changes
Inappropriate outbursts
Loss of inhibition
Repetition of movements/statements
Bowel and bladder incontinence
Disrupted sleep patterns
Visual-spatial problems
Sadness or depression

Late Stage Signs and Symptoms

Dependent for all care
Totally incontinent
Inability to communicate verbally
Weight loss
Increased sleep
Difficulty swallowing

Treatment

Drug Treatments for Alzheimer's Disease

How to Reduce Risk

Click here to learn more about how to reduce your risk of Alzheimer's disease.

Life Story Activity

In this activity you will answer the following questions to add to your life story:

What things do you do in your life that you think could increase your risk of developing dementia? Think about modifiable and non-modifiable risks.
List three lifestyle practises that help you to maintain your physical and mental health?
What would be some practises that you could adopt to reduce your risk for developing dementia and Alzheimer’s disease?

Signs & Symptoms Quiz

Click on the link below to access the quiz about stages and related signs and symptoms.

Quiz Link

Reflection

What dementia facts stood out for you?

Resources

CLICK TO ACCESS: Dispelling Myths

Progression

Please click on each topic below, and read about each of the stages.

Progression: Early Stage

Progression: Middle Stage

Progression: Late Stage

Progression: End of Life

Dispelling Myths

Visit the link here to know more about dispelling myths!

Unit 4 Tools

Unit 4: Outcomes

Develop approaches that are effective when communicating with someone with dementia
Care of self, dealing with stress
Professional support
The time when care is required

Unit 4: Part 1

Tips for Caregivers

10 Simple Tips

1) Start with a Good Feeling Each Day

Caregivers have a profound influence on the emotional state of individuals with Alzheimer’s

2) Enjoy Reminiscence Therapy

“Reminiscence Therapy” in dementia takes advantage of strong long-term memories in people with early or mid-stage dementia. Steering clear of short-term memories and reinvigorating long-term memories in Alzheimer’s patients takes advantage of powerful and emotional ties to the past.

3) Communicate More

Center yourself. As soon as you start to get upset or frustrated, stop and concentrate on taking deep, slow breaths while focusing on something that makes you feel calm and collected
Use empathy. Using empathy to connect includes focusing on the experience of your loved one with memory loss. It is important to connect with their feelings, rather than the context of their words.
Ask open questions. Use open-ended questions to redirect the conversation and to show that you’re interested in exploring what is important to them. For example, if your loved one is insisting on visiting their deceased mother, rather than reminding them that she passed away, ask her to tell you about her mother and listen with empathy as she expresses her feelings
Try asking the extreme. Asking the extreme means that you ask the person to tell you the best or worst thing about what they are expressing.
Enter their reality. Unless your loved one is in the very early stage of memory loss and wants to be reminded of a date, time or other reality based topic, join their journey rather than force reality on them.

4) Add Bright Lights

A down-to-earth Alzheimer’s trial provided 4 weeks of tailored light therapy.

The therapy significantly increased sleep quality,efficiency & total sleep duration. Daytime light therapy also significantly reduced rates of depression & agitation.

5) Prepare Midnight Munchies

People living with dementia often have the need to be awake at night. This can cause great concern for safety issues for caregivers. Ie: about falls, leaving the house

A facility in NY found the solution. Giving a nutritious snack allowed the person to calm and relax and return to bed

6) Ask Medication Questions

People with Alzheimer’s take a lot of medicine. Some boost memory and cognition. Others help mood, behavior and other conditions. Ensure medication is taken safely and correctly!

Learn the Basics

Know each medicine (prescription & over-the-counter).

Ask the doctor or pharmacist:

Why is this medicine being used?
What positive effects should I look for? When?
How long will the person need to take it?
How much should he or she take each day?
When does the person need to take it?
What if the person misses a dose?
What are the side effects? What can I do about them?
Can this medicine cause problems if taken with other medications?

7) Diet Right

DR. JAMES DUKE, FORMER U.S. DEPARTMENT OF AGRICULTURE(USDA) CHIEF OF MEDICINAL PLANT RESEARCH.

A diet that keep your heart healthy will also keep your brain healthy. Many Doctors, Dieticians and Scientists recommend a Mediterranean diet.

Eating primarily plant-based foods, such as fruits and vegetables, whole grains, legumes and nuts
Replacing butter with healthy fats such as olive oil and canola oil
Using herbs and spices instead of salt to flavor foods
Limiting red meat to no more than a few times a month
Eating fish and poultry at least twice a week
Enjoying meals with family and friends
Drinking red wine in moderation (optional)
Getting plenty of exercise

There is also growing evidence that the use of Rosemary can have to same benefits of the drug Aricept. It has several antioxidants that prevent the breakdown of the neurotransmitter, acetylcholine, that is crucial to send messages from nerve cell to another.

8) Air Out that Guilt

DR. PETER RABINS, AUTHOR, MD, MPH, JOHNS HOPKINS HOSPITAL:

Caregiving for people with chronic diseases is challenging no matter what the illness. One of the unique aspects of caring for someone with Alzheimer’s disease is that caregivers almost always feel guilty in some way. Here are some suggestions to help

Recognize You Are Doing the Best You Can
Understand that Changes in Behavior are Part of the Disease
Develop Realistic Expectations
Modify Expectations as the Disease Progresses
Accept New Behaviors and the Loss of Social Skills
Remember: Caregiving is About Love

9) Care for Yourself to Care for Them

Take care of yourself. it is one of the most important things to do as a caregiver.

Ask family members or friends to help out, do things you enjoy, use adult day care services, or get help from a local healthcare agency. These actions can bring some relief. It also may help keep from getting ill or depressed

9 Ways You Can Take Care of Yourself

Ask for help when you need it.
Join a caregivers’ support group.
Take breaks each day.
Spend time with friends.
Keep up with your hobbies and interests.
Eat healthy foods.
Get exercise as often as you can.
See your doctor on a regular basis.
Keep your health, legal, and financial information up-to-date.

10) When You Tried Your Best,

Know You Did the Best.

Adapted from National Institute on Aging, National Institutes of Health

https://www.nia.nih.gov/health/infographics/make-yourself-priority-too-tips-caregivers

Communication Framework

Communication is multi-facited and to be effective must consider all the following :

Self Awareness: Be mindful! Think about your communication style, who you are speaking to, your choice of verbal and non-verbal and be sensitive to how the other person is receiving you communication.
Verbal Communication: Choose words that will increase your listeners understanding of what you are trying to communicate
Non-Verbal Communication: Includes all communication other than words. The most influential part of communicating. People will believe more of what yo do than what you say.
Listening and Responding: We spend most of our communication time listening. Need to be in the moment, listen for meaning and not to respond. Try to understand the other’s perspective when listening-be other oriented
Adapt Your Skills: Adjust your communication including both what you are communicating and how. Your intended receiver will determine your choices.

Communication and Dementia

Click to see a list on Alzheimer's Communication

Responsive Behaviours

Click on the arrows below to navigate the slides.

Click here to access the Responsive Behaviours powerpoint

Communication Activity

In this activity you are required to read the scenario and consider the best ways to responds. You can use the “Reply box below or write your answers on a separate piece of paper.

From: The Best Friends Approach to Alzheimer Care bestfriendsapproach.com

1.Coping with forgetting:

Resident states: “I just can’t remember anything! What are my grandchildren’s names?