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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 Dignity in Care: Manitoba Palliative Care Research Unit (Unpublished).
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Une dimension importante du rôle de proche aidant d’une personne résidant en établissement de soins de longue durée consiste à défendre leurs droits, savoir agir pour les soutenir, et s’exprimer en son nom quand elle est incapable de s’exprimer ou n’ose pas le faire.
Guide : Commencez par rédiger vos idées pour veiller au bien-être, au respect et à la dignité de votre proche en songeant aux questions suivantes :
Cliquez ici pour en savoir plus au sujet des soins centrés sur la personne.
Voir aussi la section Ressources pour obtenir des conseils au sujet de la défense des droits de votre proche à des soins de qualité et de la communication avec le personnel.
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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).
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An important practice for carers of a person in care is advocating for them, meaning acting to support them, when they can’t or choose not to speak for themselves.
Guide: Begin to write your advocacy plan by thinking about the questions below.
For tips on advocacy and communicating with staff, see the helpful resources section.
,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.
Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. “Dancing with Dementia” is a vivid account of her experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. Here are three audio recordings from Christine’s book. Take a few minutes to listen to her words as she shares from the perspective of a person living with dementia. Feel free to make some notes as you listen.
After you listen to the audio recordings, take a few minutes to reflect on the following questions. Feel free to make some notes.
Dancing with Dementia by Christine Bryden
Dying is a unique experience for each person, coming in its own time and its own way. However, the process often follows a somewhat predictable path, and several physiological changes signal that death is near. Knowing what to expect during this difficult time can lessen some of the fears and apprehensions.
“We have become accustomed to nature's life and death rhythms. We anticipate them and trust their cyclic journey from life to death and unto life again. Since we, human beings, belong to the same community of life, we also move through life and death rhythms.”
Watch this video to reflect upon and learn more about what to expect when death is near.
Source: Adapted from - Quality of Life at the End of Life for Persons with Dementia, A Learning Series for Caregivers, Geriatric Psychiatry, Community Services of Ottawa, 2004
Communication is BOTH verbal and non-verbal. Both means of communication are important, however, non-verbal communication becomes an even more valuable tool when connecting with a person with dementia at the end of life.
Watching the body language of the person with dementia may help us to understand their needs better. Your knowledge of the meaning behind the person’s non-verbal cues can be important information for everyone involved in caring for the person at the end of life. Download and print a few copies of the activity sheet below. Take a few minutes to review and complete the questions. Plan to share a copy of the profile with each person involved in the care of the person with dementia.
A Caregiver’s Guide: A Handbook About End-of-Life Care
Progression Series: End of Life Part II
Day to Day Series: Communication
Alzheimer Society of Canada: What Do I Need to Know About Caring for the Person?
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 when the person nears death, and comfort measures become the focus.
Take the quiz below to learn some helpful tips to address common changes at the end of life. These strategies are not meant to substitute for medical advice and should be discussed with the healthcare team before being undertaken.
| The tips outlined in this Quiz are not intended to be substituted for medical advice and should be discussed with the health care team before being undertaken. |
A Caregiver’s Guide: A Handbook About End-of-Life Care
Alzheimer Society of Canada: What Do I Need to Know About Caring for the Person?
