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Understanding Changes

This section and its attached resources look at changing needs, including those associated with the the onset of Alzheimer Disease and dementia.

As needs change, L’Arche lives long-term committed relationships with those who are intellectually disabled, allowing many to age and die in their own L’Arche homes. L’Arche has also supported others in hospitals and long term care facilities.

Relationships of mutuality between those with a labeled disability and those who support them can deepen as people experience some of the issues that accompany aging. Although lived with considerable pain, these mutual relationships can be a source of transformation and personal and spiritual growth.



A vision of supporting people with intellectual disability as they age and die: core values.

"It is only with the heart that one sees rightly, what is essential is invisible to the eye."
Antoine de Saint Exupéry

What Danielle brought us in terms of joy, surprise and trust lives on with us—in a way transfigured, because her weakness now allows us to see her as tenderness in its “purest form”.
Love revealed through vulnerability and loss.
This guide is destined for families and caregivers who accompany, in daily life, persons with an intellectual disability who have Alzheimer’s disease. You will find tips, “how-to” ideas, and other information that will help you to live even more deeply your relationship with the person you are accompanying and to discover all that is beautiful and holy in that special companionship.
The understanding, compassion and care we show those having dementia is teaching us new ways of being with each other.
This power point compiled by Jane Powell can be used as a source of information or as a tool for training teams. It looks at symptoms, behaviors, phases of the illness and facilitating communication

Resources and Links

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


“People with an intellectual disability with their simplicity weakness and vulnerability have a gift to touch hearts and to call others to unity.
In this way they are a living reminder to the wider world  of the essential values of the heart.”
(Charter of L’Arche)