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When a person with Alzheimer's disease is in the very late stages of the disease, the focus should be on quality of life and comfort rather than on lengthening life and giving treatment. Palliative or hospice (also called comfort) care focuses on the whole person's needs-physical, emotional and spiritual.
Here we have a series of short videos with palliative care practitioner, Shari Young. Shari shares some practical tips about mouth care, skin care, stimulating circulation and addressing breathing concerns in the final stages of the disease.
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This video focuses on how to provide mouth care for someone in the final stages of dementia. Learn from palliative care practitioner Shari Young how you can help improve the comfort of the person you are caring for.
This video focuses on how to provide skin care for someone in the final stages of dementia. Learn from palliative care practitioner Shari Young how you can improve the comfort of the person you are caring for.
This video focuses on how to help with circulation for someone in the final stages of dementia. Learn from palliative care practitioner Shari Young how you can improve the comfort of the person you are caring for.
This video focuses on breathing concerns for someone in the final stages of dementia. Learn from palliative care practitioner Shari Young how you can help improve the comfort of the person you are caring for.
A Caregiver’s Guide: A Handbook About End-of-Life Care
Pain Matters: A Family Guide to Pain Management in Dementia
Alzheimer Society of Canada: What do I need to know about caring for the person?
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The experience of dying is different for each person. It comes in its own time and its own way. However, the process of dying often follows a somewhat predictable path. Several physiological (physical) changes signal that death is near. Knowing what to expect during this difficult time can lessen some of the fears and worries.
Watch this video and learn from palliative care practitioner Shari Young how you can help improve the comfort of the person you are caring for.
After you’ve watched the video, take a few minutes to reflect on the following questions. Feel free to make some notes.
Caregiver’s Guide: A Handbook About End-of-Life Care
Progression Series: End-of-Life Care Part II
Alzheimer Society of Canada: What do I need to know about caring for the person?
At the end of their lives, most people living with dementia are being cared for in a care home. The care required is extensive and is very difficult for family members to manage on their own.
This session includes the following parts:
Part 1: End of Life: Palliative Care
Part 2: Physical Comfort at End of Life
Part 3: Helpful Tips to Address Common Changes at End of Life
Part 4: A Non-Verbal Communication Profile
Part 5: Going From My Sight: A Reflection on Death and Dying
Part 6: Questions for Reflection
Summary
Work through the various parts in the session at your leisure. Move from one part to another at your own pace and in the order that makes sense to you, based on your own needs and interests.
At any time, you may scroll to the Search bar and type a specific question or topic to learn more.
Advance care planning is how you discuss, plan and document your wishes for the health care you want to receive now and in the future.
It is never too early to begin the process, and so long as you are able to speak for yourself, it is never too late.
Compassionate Alberta provides Albertans with helpful information to assist with their future health planning. Visit their webpage to learn more about the 5 steps to start advance care planning and these key documents:
Move ahead to part 4 to watch a conversation with a lawyer about Personal Directives.
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This workbook guides you to think through what is most important to you about your life, health and personal care and to share this information with the people who matter most to you, as well as with your health care providers.
Completing this workbook will help prepare you and others to make important decisions about your care now and in the future. It does not replace formal advance care planning documents such as a personal directives or Goals of Care Designation Order.
Click the link below to access print and electronic copies of the workbook. You can print and complete the workbook by hand or you can complete it electronically. Be sure to save the file on your computer to save your work.
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Supported decision-making is an authorization process that enables someone to help a capable adult make personal decisions.
Even if an adult can make their own decisions, there may be times when they need help making personal decisions.
Supported decision-making allows for adults who still have capacity (the supported adult) to select up to three individuals (supporters) to help them make personal decisions – but not financial decisions.
This authorization could help a capable adult when they:
A supporter has legal authority to:
If you believe you would benefit from supported decision-making authorization, visit the Government of Alberta website for next steps and to access the authorization form.
A supported decision-making authorization form is not registered anywhere, so the supported adult and the supporter should each have a copy.
Source: Compassionate Alberta
There are two other key roles you’ll often hear about. These will be defined as you move through the parts in this session:
It is natural when we are supporting someone living with dementia for care to become more challenging as the disease progresses and you are relied on more often. This is a time when many care partners need increased support for themselves.
The following are some tips to help you take care of yourself:
If the person you support is not in a long-term care home, make time for yourself by using respite care options, professional home care services, family members or friends, volunteer caregivers and friendly visiting programs.
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Living with dementia at any stage can be very challenging. Whether you are the person with the disease or someone who supports them, it is normal to feel a variety of emotions, including grief and loss, throughout all stages of the disease. It is important to acknowledge your feelings, care for yourself and seek the practical help and emotional support that you need.
To connect with community support or resources for assistance with grief or emotional support, scroll to the Search bar at the top of the page and type a specific question or topic. The Alzheimer Society in your community can provide educational resources to help you learn more about the disease, referrals to help you access the practical support you need, and one-on-one and group support to help you cope with the emotional impact of the disease. Contact your local Alzheimer Society today.
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MyGrief.ca: Confidential and Free Online Learning Modules
Progression Series: Late Stage
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When a person has dementia, they change. They lose the ability to communicate. They lose their personality. They lose the ability to express physical intimacy. They lose the memories of who they were, and they forget who you are.
The care partner loses the person they loved. The care partner loses the relationship, the two-sided give and take that made you parent and child or husband and wife. The care partner may also lose the companionship and reassurance of having a partner and, sadly, may lose friendships with others, too.
Anticipatory grief is the act of mourning when a loved one is expected to die. It is also mourning the loss of so much of the relationship that you used to have.
Anticipatory grief sounds like such a formal way to say, “My Mom isn’t who she used to be today, she will be someone different next week, and she will never be how she was when I was growing up. That makes me very sad!”
(Source: Obtained from Dementia Caregiving 101 - Anticipatory Grief, 2016)
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Grief is a natural human experience we all feel with loss. While most people associate loss and grief with death and dying, for persons with dementia and partners in care, loss and grief become a significant part of life.
Watch this video to learn about the range of emotions and reactions that may be experienced during grief.
In addition to these emotional losses, there may also be the loss of income, the loss of privacy, the loss of space, and the loss of time.
All these losses occur long before the person with dementia actually dies. They occur at a time when the care partner is facing long, tiring days. At a time when the care partner must meet their own mental, physical, emotional, financial, and spiritual needs and those of the care recipient.
The work is exhausting. And just about the time you adjust to Mom having forgotten the word for “fork,” she forgets how to use a fork. And you must adjust again.
( Source: Obtained from Dementia Caregiving 101 - Anticipatory Grief, 2016)
Click on the image below to download and print a copy of the Alzheimer Society’s resource, Ambiguous Loss and Grief in Dementia: A Resource for Individuals and Families. This resource is meant primarily to help care partners gain a better understanding of how loss and grief can affect you and the person with dementia. It also provides valuable information to help people with dementia deal with their own losses and grief and live as well as possible with the disease.
Source: http://www.dementiacaregiving101.com/anticipatory-grief.html
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Managing Ambiguous Loss and Grief
Progression Series: Late Stage
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Bereavement counsellor Linda Aris helps us understand the grieving process and how it affects a care partner’s journey.
Watch this video and learn how to take care of yourself along the way.
After you watch the video, take a few minutes to reflect on the following questions. Feel free to make some notes.
To connect with community supports/resources for assistance with grief or emotional support, scroll to the Search bar at the top of the page and type a specific question or topic.
The Alzheimer Society in your community can provide educational resources to help you learn more about the disease, referrals to help you access the practical support you need, and one-on-one and group support to help you cope with the emotional impact of the disease. Contact your local Alzheimer Society today.
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This session includes the following parts:
Part 1: Our Experience of Grief
Part 2: Anticipatory Grief
Part 3: Taking Care of Yourself
Part 4: Learning to Balance
Part 5: Questions for Reflection
Summary
Work through the various parts in the session at your leisure. Move from one part to another at your own pace and in the order that makes sense to you, based on your own needs and interests.
At any time, you may scroll to the Search bar and type a specific question or topic to learn more.
Click on the icon below to download and print a brief self-reflection activity sheet. The purpose of this tool is to help you think about what you have learned and to provide a space for you to document some of your thoughts and ideas for moving forward.
Dementia typically follows certain stages that will change the person's and family's lives. Because the disease affects each individual differently, the symptoms, the order in which they appear, and the duration of each stage vary from person to person. In most cases, the disease progresses slowly, and the symptoms of each stage may overlap, often making the move from one stage to another quite subtle. The duration of the disease is usually seven to ten years but may be much longer in some people.
The stages of Dementia are commonly referred to as Early, Middle and Late. End-of-life is described as the period when a person nears death, and the primary focus is on providing comfort measures.
The late stage of Dementia may also be called "severe" or "advanced.” People in the late stage have reduced cognitive ability. Eventually, they become unable to communicate verbally or look after themselves. They also become more frail physically and need 24-hour care. The goal of care at this stage is to continue to support the person to ensure the highest quality of life possible.
Click and download the infographic below to learn more about the late stage of Dementia.
Take the quiz below to learn some helpful tips for addressing care issues in the late stage of Dementia.
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Progression Series: Late Stage
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