Grief is an omnipresent part of the dementia journey, experienced by both persons with dementia and their loved ones.
It can present in a variety of ways ; whether ambiguous loss, anticipatory grief or the loss of an earlier life grief should be fully acknowledged and reckoned with.
A selection of resources follows that may assist in this process.
Paper: Relationships and dementia – Alzheimer’s Australia NSW Discussion Paper Number 19 (June 2017)
This discussion paper concludes that society needs to recognise, acknowledge and understand that people living with dementia, their carers and families face relationship difficulties and challenges, and more support is needed to enable people to work through complex feelings of grief and loss.
Loving someone who has dementia : how to find hope while coping with stress and grief / Pauline Boss (c2011)
This book is intended for partners, family members, friends, neighbours and caregivers of a person living with dementia.
The author discusses the meaning of relationships and offers approaches in a conversational style, suggesting ways to embrace rather than resist the ambiguity of a relationship with someone who has dementia.
Book chapter: Being with grief
in Caring for a loved one with dementia : a mindfulness-based guide for reducing stress and making the best of your journey together / Marguerite Manteau-Rao (2016)
This chapter looks at ways that mindfulness can help care partners be with their grief while also exploring the grief experience for the person with dementia and what that means for the relationship.
The year of magical thinking / Joan Didion (2007)
In what has become a classic, Joan Didion in a clear and precise voice narrates a year that began when her husband, the writer John Gregory Dunne, collapsed from a fatal heart attack. Written to purge her grief and to set her loss in the context of her resulting life the result is compelling reading.
“Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.”
“We are imperfect mortal beings, aware of that mortality even as we push it away, failed by our very complication, so wired that when we mourn our losses we also mourn, for better or for worse, ourselves. As we were. As we are no longer. As we will one day not be at all.”
And Time Stood Still / By Alice Taylor (2016)
The author has known, loved, and lost many people throughout her life. When we experience grief, sharing in someone else’s story can often help, and in the hands of master storyteller Alice Taylor, it may be possible to find solace and the space to reflect on your own loss.
The bereavement experience of spousal caregivers to persons with dementia: Reclaiming self / Shelley Peacock, [et al] in Dementia Published online February 17, 2016
Spouses of persons living with dementia both anticipate future loss and grieve for multiple losses occurring with caregiving and this ultimately influences their bereavement experience.
Dementia grief: A theoretical model of a unique grief experience / Kesstan Blandin and Renee Pepin in Dementia (2017) Vol 16, Issue 1, pp. 67 – 78
This paper introduces the Dementia Grief Model, describing the unique characteristics of dementia grief, and presents the psychological states associated with the process of dementia grief.
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