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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?
Acknowledgement for the Development of My Tools 4 Care (MT4C)
The idea for My Tools 4 Care (MT4C) began with a study of 80 caregivers of persons with dementia that intended to gain a better understanding of their hope, quality of life, and transitions. The results highlighted the need for the creation of programs to help family caregivers of persons with dementia through the complex transitions they experience. With assistance from the Alzheimer Society of Alberta and Northwest Territories and the Alzheimer’s Society of Calgary, a Transition Toolkit was developed for caregivers of persons with Alzheimer’s disease and Related Dementias, in paper format.
This Transition Toolkit was evaluated by 20 caregivers who found it to be easy to use and helpful in dealing with significant transitions. Feedback from these caregivers and findings from a study on family caregivers of older persons with dementia and multiple chronic conditions, have contributed to the present online version of the MT4C toolkit. My Tools 4 Care has been used by 198 caregivers of persons with dementia and multiple chronic conditions in Ontario and Alberta. These caregivers reported that the toolkit encourages self-reflection, validation, and confirmation as a caregiver. Moreover, the information in the MT4C toolkit helps caregivers anticipate and plan for the future, and can provide a new perspective on hope.
My Tools 4 Care would not have been possible without the support from the pan-Canadian research team, partners, and funders. We would like to acknowledge Dr. Wendy Duggleby from the University of Alberta, and Dr. Jenny Ploeg and Dr. Carrie McAiney from McMaster University, for their knowledge, hard work, and dedication in leading the study team through the development and evaluation of My Tools 4 Care. As well, we would like to thank the co-investigators Dr. Maureen Markle-Reid, Dr. Allison Williams, Dr. Dorothy Forbes, Dr. Sunita Ghosh, and Dr. Jean Triscott; for their time and insight. Our deepest gratitude is also due to our partners at the Alzheimer Society of Alberta/NWT, Alzheimer Society of Calgary, Alberta Caregivers Association, Alzheimer Society of Brant, Haldimand Northfork, Hamilton, and Halton, Ontario, and the Alzheimer Society of Ontario; for actively assisting the research team during the evaluation of the toolkit. Finally, we would like to convey our gratitude to all those caregivers who helped to develop and evaluate My Tools 4 Care and the University of Alberta Faculty of Nursing, the Canadian Institute of Health Research, the Aging Community and Health Research Unit, and Alberta Health Services for their funding support.
Acknowledgement for the Development of My Tools 4 Care – In Care (MT4C-In Care)
Family caregivers of persons living with dementia and multiple chronic conditions approached the research team and expressed a desire to have a resource to support them through the transitions they experience when their family member moves into a 24-hour care home. With input from these caregivers, a previously developed and tested online intervention for family caregivers of persons with dementia in the community, My Tools 4 Care, was revised to address the needs of caregivers of persons in a 24-hour care home. This new toolkit, called My Tools 4 Care-In Care (MT4C-In Care), was pilot tested by 37 caregivers in Alberta who found it easy to use, feasible, acceptable, and useful in helping caregivers through transitions.
Following this pilot study, additional funding was received for a large national study of family caregivers of older adults living with dementia in long-term care. This study involved caregivers in Alberta, Saskatchewan, Manitoba, and Ontario who participated in focus groups (45 caregivers) and a large pragmatic trial (234 caregivers). The current version of MT4C-In Care was revised based on what we learned from these caregivers. It is important to note that the majority of the participants were white, and were the spouse or the child of the older adult living with dementia. Therefore, the toolkit may not reflect the needs of caregivers with other characteristics or backgrounds. The toolkit was translated from English to French in 2021. Twelve caregivers in Quebec provided feedback on the toolkit during 3 virtual focus groups. Suggested revisions have been made, and we have invited 20 additional francophone caregivers to use MT4C-In Care over a 2-month time period. Feedback obtained during telephone interviews will be incorporated into the final French version of MT4C-In Care.
MT4C-In Care would not have been possible without support from the pan-Canadian research team, partners, and funders. We would like to acknowledge the primary investigator Dr. Wendy Duggleby from the University of Alberta, for her knowledge, hard work, and guidance of the study team through the initial development and evaluation of MT4C-In Care. As well, we would like to thank the co-investigators of the pilot study Dr. Jenny Ploeg, Dr. Carrie McAiney and Dr. Sharon Kassalainen from MacMaster University, Dr. Sunita Ghosh, Dr. Dorothy Forbes and Dr. Cheryl Nekolaichuk from the University of Alberta, Dr. Jayna Holroyd-Leduc from the University of Calgary, Dr. Shelley Peacock from the University of Saskatchewan, Dr. Kevin Brazil from Queen’s University in Belfast, and Dr. Jasneet Parmar from Covenant Health for their time and expertise. We would also like to acknowledge and thank Drs. Wendy Duggleby and Hannah O’Rourke, University of Alberta, for co-leading the national study.
We appreciate the support of the provincial leads: Drs. Wendy Duggleby and Hannah O’Rourke from the University of Alberta, Dr. Pamela Baxter from McMaster University, Dr. Shelley Peacock from the University of Saskatchewan, Dr. Genevieve Thompson from the University of Manitoba, and Dr. Veronique Dube from the Université de Montréal. We thank the contributions of our research team members Drs. Sunita Ghosh and Cheryl Nekolaichuk from the University of Alberta, Jayna Holroyd-Leduc from the University of Calgary, and Carrie McAiney from the University of Waterloo.
Our deepest gratitude are also for those caregivers who shared their insight and helped the research team during the creation and evaluation of MT4C-In Care and to the advisory committee members and partners at the Alzheimer Society of Alberta and Northwest Territories, Institute for Continuing Care Education and Research (ICCER), Canadian Hospice Palliative Care Association (CHPCA), and ATMIST. Finally, we would like to convey our gratitude to our funders at the Canadian Frailty Network, Covenant Health Network of Excellence in Senior’s Health and Wellness, the Public Health Agency of Canada Dementia Community Investment, the University of Alberta Faculty of Nursing, and the Alzheimer Society of Alberta and Northwest Territories.
This book is about life changes. It is meant to help you prepare for possible changes, and to connect you with services in your community. It has suggestions and information about resources to help you. It is based on what people receiving palliative care, their families, and health care providers have told us.
In this presentation, Kath will discuss the terminal nature of Alzheimer's Disease and explore what this means for your role in caregiving, navigating, decision-making, and advance care planning. Kath will draw on her experiences as a hospice palliative care nurse and thanatologist. Please send questions in advance and prepare to participate during the session.
Palliative care nurses will explain what to expect in the end stage of dementia and how to provide comfort to someone who is near the end of life.
Guide : Inscrivez vos idées quant aux objectifs de soins souhaités à l’intention de votre proche au seuil de leur fin de vie, à partir des discussions précédentes que vous avez tenues ou de la compréhension actuelle des souhaits de votre proche. Rappelez-vous aussi du soutien dont vous avez besoin.
Il se peut que l’établissement et le personnel veuillent obtenir des renseignements plus détaillés, mais cette activité consiste à ce que vous commenciez à songer aux objectifs de soins en fin de vie dès maintenant.
Vous pouvez en outre consulter le document intitulé Préparer l’avenir : Apprendre au sujet des troubles neurocognitifs et des soins de fin de vie, conçu et utilisé avec la permission de Genevieve Thompson, Ph.D.* Il a été créé pour aider les proches aidants de personnes vivant avec des troubles neurocognitifs à communiquer entre les membres de la famille et le personnel de l’établissement de soins de longue durée.
*Thompson, Genevieve. 2015. Preparing for the Future: Learning about Dementia and Care near the End of Life. Dignity in Care: Manitoba Palliative Care Research Unit (Unpublished).
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Booklet
The Progression of Alzheimer's Disease
This valuable resource is available online at:
http://www.alzheimer.ca/english/disease/progression-intro.htm
Websites
Alzheimer Society of Canada
http://www.alzheimer.ca
The Alzheimer Society of Canada identifies, develops and facilitates national priorities that enable its members to effectively alleviate the personal and social consequences of Alzheimer's and related diseases, promotes research and leads the search for a cure. On this website you will find facts, causes, myths, statistics, support groups and treatment options.
The Alzheimer Society has useful information on the transition to long term care. Information on preparing for the move, the moving day, and adjusting can be found at the following link: http://alzheimerottawa.ca/we-can-help/links-and-resources/e-learning/transition-to-long-term-care
Canadian Hospice and Palliative Care Association
http://www.chpca.net/
The Canadian Hospice Palliative Care Association (CHPCA) offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. You will find a list of palliative care programs in different provinces and resources.
Changes Toolkit
https://www.changestoolkit.ca/
The Changes Toolkit is a website with activities and resources to help palliative care patients and their family caregivers deal with transitions.
Health Canada: Natural Health Products
http://www.hc-sc.gc.ca/
The Natural Products site at Health Canada provides information on "herbal" or other natural products. Go to the Health Canada website (use the link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Natural Health Products (also on the left side).
Heart and Stroke Foundation
http://www.heartandstroke.ca
The Heart and Stroke Foundation, a volunteer-based health charity, leads in eliminating heart disease and stroke and reducing their impact through the advancement of research and its application, the promotion of healthy living, and advocacy. On this website you will find health information about heart disease, stroke and healthy living, as well as multicultural resources.
Health Canada: Drug Products
http://www.hc-sc.gc.ca
The Drug Products site at Health Canada provides information on drugs approved for use in Canada. Go to the Health Canada website (use link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Drug Products, (4) Drug Product Database, (5) Access the Drug Product Database.
Living With Dementia: Resources for Living Well
http://www.livingwithdementia.uwaterloo.ca/index.html
This site was developed for persons living with dementia and their family care partners. It contains helpful information and resources to help prepare for the road ahead.
Medline Plus (U.S.)
http://www.nlm.nih.gov/medlineplus/
Medline Plus contains information on a wide range of diseases, medications, and other health topics. Some information is available in multiple languages or in multiple formats (e.g. text, video, and interactive tutorial).
Books about Real-Life Dementia Experiences
€˜Dancing in the Elevator' by: Barbara Schulman, Beverly Grostern and Donna Lordon.
This book contains a compilation of anecdotes about life with Alzheimer's disease.
€˜Dancing with Dementia' by: Chrisitne Bryden
This book is a vivid account of a top civil servant and mother of three who was diagnosed with dementia at age 46. The author writes about the day to day challenges she deals with as a person affected by dementia.
Research Studies
Aging, Community and Health Research Unit (https://achru.mcmaster.ca)
Caregiver-Friendly Workplaces (http://ghw.mcmaster.ca)
Living with Hope Research Program (http://www.nurs.ualberta.ca/livingwithhope)
Murray Alzheimer Research and Education Program (https://uwaterloo.ca/murray-alzheimer-research-and-education-program/education-and-knowledge-translation/products-education-tools/by-us-for-us-guides#Safely)
Video Resources:
Dementia: Palliative care at the end of life
Reflections on caring for my mother
Dying in long term care: Preparing families and staff
PREPARING FOR THE FUTURE: Learning about Dementia and Care near the End of Life
Asking questions of health care providers can sometimes be hard. Many of us simply do not know the questions we could be asking to help us better understand and plan for the future.
This question prompt sheet has been designed to open up conversations between you, your family, and members of the health care staff in this facility. The answers to these questions may not be simple or straightforward; dementia affects each person in different ways.
By asking these important questions, we hope you are able to get the information you need regarding how things might progress towards the final stages of life and help prepare you for the future.
Guide: Write your thoughts about the goals of care you wish your family member/friend to receive as they approach end of life, based on previous discussions or understanding of your family member/friend's wishes. Remember to consider supports that you need as well.
The facility and staff may want more detailed information, but this activity is to get you to begin to think about the goals for care at the end of life, now.
You can also see the Preparing for the future question prompt sheet, designed by and used with the permission of Genevieve Thompson*. It was designed to help family caregivers of persons living with dementia with communication between family members and care facility staff.
*Thompson, Genevieve. 2015. Preparing for the Future: Learning about Dementia and Care near the End of Life. Dignity in Care: Manitoba Palliative Care Research Unit (Unpublished).
, , Download File
Advocacy and Communicating with Staff:
Person-Centred Language Guidelines
Grieving and Loss:
Seeds of Hope Family Learning Series (Session 14 - Taking Care of You: Grief and Self Care)
Ambiguous Loss & Grief - brainXchange Webinar
Transitioning to Long-term Care:
Visiting a Person with Dementia
The Visitor Guest Book: A Tool to Stay Informed
Other Information:
Helping children understand Dementia
Links to other fact sheets for caregivers by the Alzheimer Society, ranging from tips for after the move, care for the caregiver, maintaining relationships, taking a break, financial planning, and managing conflict.
Websites and Online Communities:
Alzheimer Society: About Dementia
Dementia is a general term that refers to a variety of brain disorders. Physical changes in the brain cause dementia. Learn more in this section about dementia, its impact on the brain, and how to keep your brain healthy.
Canadian Hospice and Palliative Care Association
The Canadian Hospice Palliative Care Association (CHPCA) offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. You will find a list of palliative care programs in different provinces and resources.
The Changes Toolkit has activities and resources to help palliative care patients and their family caregivers deal with transitions.
Health Canada: Natural Health Products
The Natural Products site at Health Canada provides information on “herbal” or other natural products. Go to the Health Canada website (use the link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Natural Health Products (also on the left side).
The Heart and Stroke Foundation, a volunteer-based health charity, leads in eliminating heart disease and stroke and reducing their impact through the advancement of research and its application, the promotion of healthy living, and advocacy. On this website you will find health information about heart disease, stroke and healthy living, as well as multicultural resources.
The Drug Products site at Health Canada provides information on drugs approved for use in Canada. Go to the Health Canada website (use link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Drug Products, (4) Drug Product Database, (5) Access the Drug Product Database.
Living With Dementia was developed for persons with dementia and their family care partners. It contains helpful information and resources to help prepare for the road ahead.
Medline Plus contains information on a wide range of diseases, medications, and other health topics. Some information is available in multiple languages or in multiple formats (e.g. text, video, and interactive tutorial).
Books about Real-Life Dementia Experiences:
Dancing in the Elevator by Barbara Schulman, Beverly Grostern and Donna Lordon.
This book contains a compilation of anecdotes about life with Alzheimer’s disease.
Dancing with Dementia by Christine Bryden
This book is a vivid account of a top civil servant and mother of three who was diagnosed with dementia at age 46. The author writes about the day-to-day challenges she deals with as a person affected by dementia.
