Resources and Links
General Information for older adults:
Health Canada: (English and French)
- Useful information sheets on topics such as foot care, vision care, hearing, heart, diabetes, osteoporosis, etc. may be ordered or downloaded.
In the section on health promotion:
- Guide for physical activity for older adults and handbook to the guide (illustrated with checklists) may be ordered or downloaded.
- Falls: Section, seniors and aging, July 2009, brochure on fall prevention and an illustrated guide of what to do if you fall or witness a fall, after a fall
- Home safety: Publications A-Z. Very good downloadable “Safe Living Guide-Guide to Home Safety for Seniors” contains checklists for home safety inside and out, nutrition, physical activity, medication safety, and fall prevention.
- Assistive devices: Publications A-Z. « Go For It : A Guide for Choosing and Using Assistive Devices»
- For seniors and disabled adults, a guide to defining needs and goals and the necessary aids to achieving them, adaptations to homes, daily activities analysis
In the section on food and nutrition: (English and French)
- Downloadable food guide and “my food guide”, an interactive tool to customize the food guide according to age, sex and physical activity
University of Montreal (English and French)
- A good guide for healthy eating, hydration, weight, food conservation, stimulating appetite, and other helpful hints
Scottish Down’s Syndrome Association: (English only)
- Very good material for people with disabilities, in booklet form and well illustrated, that can be ordered under resources information/list of publications. See “Keeping Well” and “Getting Older”.
IASSID
- Fact sheet on aging and intellectual disability
The ARC web-site (English only)
- community based site of and for people with intellectual disabilities
- good articles on aging with developmental disabilities: under resources, go to publications and search aging:
- physical activity and developmental disability, changes in vision, changes in hearing, aging with developmental disability: women’s health issues
Books
Aging: The Fulfillment of Life (Henri Nouwen and W. Gaffney) ISBN 0-385-00918-6
- an inspirational look at how to make the later years a source of hope rather than loneliness
Ontario Partnership on Aging and Developmental Disabilites (English)
- Very useful documents and tools for transition planning aimed at supporting continuing quality of life and best practices: identifying changes, best practices, etc. Includes checklists for planning
- See Blueprint for Transition and Transition Guide for Caregivers (downloadable)
Registered Nurses Association of Ontario (English and French)
- Clinical practice guidelines-fact sheets on a range of topics including diabetes, constipation, incontinence, caring for people with delirium, depression and dementia.
Victorian Order of Nurses (English and French)
- Good source of caregiver information and resources including self-care tips and checklist for caregivers
- Directory of available resources for changing needs and conditions and where to find them in all provinces and territories
Regional Geriatric Assessment Programs: (may have different names in different provinces)
- Provide both in-patient and out-patient assessments for older individuals; helpful in situations when an individual experiences significant changes but the reason is not apparent.
in Quebec: list of CLSC by region
International Association for the Scientific Study of Intellectual Disabilities (English)
- The Edinburgh Principles: guidelines for the care of people with intellectual disabilities who have dementia
Alzheimer’s Associations (English and French)
- Contact the site to find the association’s nearest location. There are links for downloading many very informative and useful brochures (including warning signs, diagnosis and treatment, daily living, communication, support and self-care and much more). Local associations are very supportive and often have counselors who will consult with teams.
In consultation with Alzheimer Canada (English and French)
- very good, practical information on: normal aging vs. Alzheimer, early signs, downloadable symptom diary, memory test, what the doctor needs to know (preparing for appointments, including downloadable questions to ask the doctor) treatment goals, measuring success, care for caregivers
Passeport-Santé (French)
- prevention and information on different illnesses, includes special sections on diabetes and cancer
Occupational Therapists Association (English and French)
- go to “short cuts” (caregivers) on arthritis, neck pain, chronic pain, memory
- also “short cuts” on Alzheimer: reducing caregiver stress, encouraging social skills, using the senses to connect, emotional awareness, safety
Neuromédia (French)
- dementia (definition, signs, diagnosis), depression, Alzheimer
- evaluation tests for aging
- Some material is accessible to the general public (free access), otherwise by subscription (30$/year)
U-First! (English)
- Training association for people working with people having Alzheimer or related dementias: gives information on training sessions in Ontario.
American Association for Mental Retardation (English)
- Janicki: power point on dementia, intellectual disability and community care models
Institut Universitaire de Gériatrie de Montréal (French)
- cognitive limitations and communication
- includes following topics: pointers for daily living, managing emotions, self-care, living with change, adapting to a new situation, wise use of medication
Books and Reviews
Books Beyond Words (any language)
- Series of very well- illustrated pictorial books that can be used for any language: Going to the Doctor and Going into Hospital talk about information, feelings and consent; useful before consultations or treatment. Getting on with Cancer deals honestly with the unpleasant side of treatment (surgery, radiation, chemotherapy); designed as a counseling tool for people with disabilities who have cancer.
Down’s Syndrome Scotland Association (English)
Books which are clear, simple, and well-illustrated
- What is Dementia and Living with Dementia
Living At Home with Alzheimer: Navigating the Alzheimer Journey (Carol Bowlby Sifton)
- much helpful information, also contains good templates for life story books
Rethinking Dementia-An Australian Approach (Sally Garrat and Elery Hamilton-Smith)
- gives ideas for creating a stimulating environment without creating undue stress
Alzheimer Disease and Aggression: A Guide for Caregivers (Michael Stones) ISBN 1-896691-35-8
- project through Health Canada, University of Waterloo, and Alzheimer Society of Kitchener
- practical guide to dealing with aggressive behavior, communication
Aging, Rights and Quality of Life (Stanley Herr and Germain Weber) ISBN: 1-55766-380-7
Mental Health, Intellectual Disabilities and the Aging Process: ISBN: 1-405-0164-4
- series of publications by IASSID and edited by Matthew Janicki addressing health, adult development and aging among persons with intellectual disabilities; a practical resource for support, care and treatment of mental and behavioral health problems
Community Supports for Aging Adults with Lifelong Disabilities (Matthew Janicki and Edward Ansello)
ISBN: 1-55766-462-5
- very comprehensive book around aging with disabilities, quality of life models, belonging, families and caregivers, and much more
Le Mystère Alzheimer-l’accompagnement, une voie de compassion (Marie Gendron)
ISBN 978-27619-2525-9
- written by a gerontologist and master in nursing science, excellent source of information, clear and concrete answers for accompanying with dignity, includes many testimonials
L’ABC de la Maladie d’Alzheimer (Sophie Ethier) ISBN : 2-89415-154-3
- written by a gerontologist and supported by Alzheimer Society for families, «informal » caregivers
- a factual, practical guide to issues arising through daily life: helping with dressing, reducing agitation, ensuring a secure environment, how to speak to family members about the illness
Canadian Review of Alzheimer Disease and Other Dementias: (English and French)
- Published 3 times a year in both English and French. Accessible yet comprehensive language, on all aspects of Alzheimer for both patient and caregiver; includes case studies of people at various stages of Alzheimer
Health Canada (English and French)
- seniors section (publications) provides palliative care info-sheet
Canadian Palliative Care Association (English)
- where to find resources in palliative care, pain management, hospice care
Canadian Virtual Hospice
- is a reputable source of information and support for palliative care.
- topics include symptoms/managing pain, practical guide for providing care, health care directives, spiritual health/rituals to comfort families, considerations for a home death, grief
Ontario Ministry of Health and Long Term Care (English/French)
- home, community and residential care for seniors
- finding long term care facilities
- in Senior’s Care: go to long-term care homes, choosing a home to find a residential care checklist to help assess different facilities as you visit them
Community Care Access Centres and CLSC (in Quebec)
- support, resources, and documentation for palliative care and long-term facilities
- directory of health care services in Quebec, including CLSC, long-term care facilities, palliative care, home support
McGill University: Council on Palliative Care (English/ French)
- questions and answers on Palliative Care, where to find resources, many free on-line books and resources
Quebec Association of Palliative Care (French)
- where to find an exhaustive directory of resources and documentation, palliative care associations across Quebec and Canada (see documentation section-links)
- find power points from conferences (documentation section).
- See 2006: “Sacré souffrance, Souffrance Sacré” on understanding and responding to suffering and recognizing how it can help one to grow
- Spirituality and End of Life Rituals
Edmonton Palliative Care Program (English)
- provides good, clear information on palliative care, the role of different care professionals, personal directives, organ donation, grief and bereavement, etc.
Hospice Foundation of America (English)
- contains information on caring for the caregiver, caring for someone who is dying, the dying process
Centre for Excellence in Aging Services
- end of life care for persons with developmental disabilities
Canadian Resource for Pain Management (English/French)
- for health-care professionals only
- most palliative care units have experts on pain control and management of symptoms (refer to Palliative Care Associations near you)
Community Legal Information Ontario (English/French)
- interesting articles in accessible language, includes information on power of attorney
Quebec Government (English/ French)
- Citizen’s Services provide information on mandates in case of incapacity
Curateur public du Québec (English/French)
- provides information on mandate in case of incapacity and consent to care, definition, role and power of attorney forms. The Service of Consent to Care may also be reached by phone at 1-800-363-9020
Justice Québec (French)
- legal questions, mandates in case of loss of autonomy, health and consent to medical care
Advocacy Centre for the Elderly (English)
- community-based legal clinic
- information on elder abuse, advance care planning, long-term care homes, consent and capacity, power of attorney
Community Legal Clinics
- offer free legal advice on a variety of topics
deVeber Institute:
- Talks and discussion about palliative care and ethical concerns at end-of-life. Speakers are Susan Morgan (community chaplain with St. Elizabeth Health Care),Dr. Paul Zeni (family physician and palliative care consultant) and Jane Powell (L’Arche assistant and graduate of Grief and Bereavement program)
- The DVD of the event hosted by the The deVeber Institute and L’Arche Toronto is available from The deVeber Institute for $20. To order it: contact Elaine Zettel at The deVeber Institute at: bioethics@deveber.org or 416-256- 0555
Books
Books Beyond Words (any language)
- Series of very well- illustrated pictorial books that can be used for any language:
- for people with disabilities Am I Going To Die? looks at dealing with both physical deterioration and the emotional aspects of dying and includes guidelines for caregivers and those supporting people with disabilities who are terminally ill.
Down’s Syndrome Scotland Association (English)
- Books which are clear, simple, and well-illustrated
- Let’s Talk About Death for people with a developmental disability, talks about death and burial.
Council on Palliative Care
- many reading resources including:
Caring for Loved Ones at Home (Harry Van Bommel) ISBN 1-55307-016-X
Soigner un Etre Cher à Domicile (Harry Van Bommel) (French)
- excellent, illustrated, easy to follow guide to short and long-term care
- includes living with a dying person, detailed information on hygiene, daily care, nutrition, adapting the home, visiting, dialogue with doctors and caregivers, creating a support team, keeping a sense of humor, etc.
American Association for Intellectual Disabilities (English)
- People Planning Ahead ISBN 978-940898-98-1 (includes CD)
- guide to communicating health care and end of life wishes
British Institute of Learning Disabilities (English)
- Caring for People with Learning Disabilities who are Dying (Noelle Blackman and Stuart Todd) ISBN 1 903269 172 C7.50
- full of practical advice; addresses mortality and disabilities, telling someone they are dying, working with families and professionals, care issues, funerals, bereavement support
Hospice Foundation of America (English)
- The Dying Process
The Four Things that Matter Most (Ira Byock) ISBN 0743249097 (English)
- Saying goodbye, healing relationships
Dying Well: The Prospect of Growth at the End of Life (Ira Byock) ISBN 1573226572 (English)
- doctor and authority on palliative and end of life care
- stories of dying patients and families and finding meaning in the transition to death
Two books from the Canadian Housing and Mortgage Corporation At Home with Alzheimer’s, Maintaining Seniors ’ Independence through Home Adaptations and the Safe Living Guide are available. They may be helpful in pointing out things that may be unsafe and giving suggestions of ways to make the situation safer.
- At Home With Alzheimer's Disease
- Maintaining Seniors' Independence Through Home Adaptations — A Self-Assessment Guide
Living with Learning Disabilities, Dying with Cancer
Irene Tuffrey-Wijne (Foreword by Sheila Hollins)
ISBN: 978-1-84905-027-2, BIC 2: JKSN2. This book of thirteen personal stories will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who have cancer and who are dying, including health and social care professionals, families and friends.
Government of Canada, Ontario and Municipalities (English/French)
- succession, what to do following a death, funerals
Government of Manitoba (English/French)
- funeral and cemetery services-glossary of terms
- frequently asked questions
Government of Alberta (English)age booklet published by the Government of Alberta, Alberta Seniors and Community Supports deals with the practical and legal aspects of dying (funerals, burial, wills, estates, paperwork, etc.) and provides helpful information plus references and checklists.
- Saying Farewell: This 36-page booklet published by the Government of Alberta, Alberta Seniors and Community Supports deals with the practical and legal aspects of dying (funerals, burial, wills, estates, paperwork, etc.) and provides helpful information plus references and checklists.
Funeral Cooperatives Of Quebec (French)
- succession, what to do following a death, funerals
France Obseques Liberté (French)
- exhaustive documentation on funerals, includes information on funerals in different religious traditions
Lasting Gifts (English)
- Manual “Lasting Gifts: Living with Intention, Dying in Peace” (Kim Ebert-Colella and Shannon Harder Ronald) ISBN 978-1-60402-130-1
Excellent tool for end of life planning, funerals and services, resources. Contains forms for a variety of topics (family, medical, financial, legal, etc.)
Books
Books Beyond Words (any language)
Series of very well illustrated pictorial books that can be used for any language:
- When Dad Died deals with death, grief, burial. When Mom Died deals with death, grief and cremation.
More Than Inclusion: Honouring the Contributions of People with Developmental Disabilities
ISBN 0-9738067-1-0
- chapter on ending life well is of particular interest
Aging: The Fulfillment of Life (Henri Nouwen and W. Gaffney) ISBN 0-385-00918-6
- an inspirational look at how to live the later years as a source of hope rather than loneliness
Our Greatest Gift: A Meditation on Dying and Caring (Henri Nouwen)
ISBN 978-0-06-180026-9
- a personal look at aging, loss, grief and fear
Grief
Funeral Cooperatives Of Quebec (La Gentiane) (French)
- Support for persons who are mourning
- Tools for support in bereavement
- Brochures on shock, denial, disorganization, re-appropriation of life, healing and transformation.
- Texts, poems, book suggestions
Local Memorial Societies and Funeral Cooperatives
- Often have good resources (brochures and booklets) on grieving
Books
Books Beyond Words (any language)
Series of very well- illustrated pictorial books that can be used for any language:
- “When Dad Died” deals with death, grief, burial. “When Mom Died” deals with death, grief and cremation. “When Somebody Dies” deals with grief and exploring emotions.
www.worthpublishing.com :
Loss and Learning Disability (Noelle Blackman) ISBN 1-903269-02-4 (English)
- addresses how people with developmental disabilities are affected by bereavement, strategies to prevent grief complications
La Peine des Sans Voix: L’accompagnement des Déficients Intellectuelles en Deuil (Marielle Robitaille) ISBN 9782922762372 Editions Académie Impact
- recognizing symptoms of unresolved grief, strategies of adapted accompaniment, developing made to measure support tools for people with an intellectual disability
Aimer, Perdre et Grandir (Jean Monbourquette) ISBN 9782895079408 Editions Bayard
- guide for reflection and personal growth activities following an emotional loss
- poetry and inspirational texts
“A Letter of Consolation” (Henri Nouwen) ISBN 0060663148
- moving account of Henri Nouwen’s grief over the loss of his mother
Our Greatest Gift: A Meditation on Dying and Caring (Henri Nouwen) ISBN 978-0-06-180026-9
- a personal look at aging, loss, grief and fear
Helping Adults with Mental Retardation Grieve a Death Loss (Charlene Luchterhand and Nancy Murphy) ISBN-10:1560327685
- In spite of its dated language the book offers much practical information for supporting people with disabilities who are grieving
“On Grief and Grieving: Finding the meaning of Grief Through the Five Stages of Loss
(Elisabeth Kubler-Ross and David Kessler) ISBN 0743266293
