Family members of people with dementia often experience a continuous and profound sense of loss and subsequent grief as they live through the progression of the disease.
“Dementia creates ambiguous loss. The duality of your loved one’s being absent and present at the same time is confusing, and finding meaning (or making sense of your situation) becomes immensely challenging. Without meaning, it’s hard to cope”. (P. Boss, 2011)
Faced with a lack of practical and educational resources on ambiguous grief and loss among people with dementia, family members and the staff who support them, the Alzheimer Society developed evidence-based practical resources written from a person-centred perspective.
Ambiguous loss and grief: a resource for healthcare providers is a practical resource to help health-care providers identify, acknowledge and normalize the feelings of loss and grief experienced by family caregivers of a person with dementia— from diagnosis to end-of-life and after caregiving.
Ambiguous loss and grief in dementia: a resource for individuals and families is a practical resource to help people with dementia and their families understand how the feelings of loss and grief can affect them.
Dementia and staff grief is a resource for organizations and their personnel on better understanding the multiple losses experienced by staff caring for people with dementia.
- Webinar on ambiguous grief and loss presented by the Canadian Dementia Resource and Knowledge Exchange.
- Webinar on dementia and staff grief presented by brainXchange.
- Grief, Loss and Dementia: caregivers share their journeys (DVD). Vancouver Island Health Authority, 2011 and supporting documents CD (Workbook for Dementia Caregivers, A Quick Guide For Family Caregivers, and A Quick Guide for Professional Caregivers).
- Grieving, Alzheimer Society of Canada.
- The Ambiguous Loss of Dementia: Finding Meaning and Hope, Pauline Boss, September 2009.
- Grief in times of celebration: the empty spot. Horst, Glen, Canadian Virtual Hospice
- Loss, Trauma and Resilience, Pauline Boss, W.W. Norton & Company, 2006.