Loss and Grief in Dementia

Guidance and Resources
InfORmAtIOn And ReSOuRCeS tO SuppORt
GuIdAnCe AReA 4.3
a. Be aware of the types of losses and the transitions encountered by family
members of people with dementia
As described in the four key considerations to good practice, individual and family reactions to dementia
are unique. Families can experience profound grief as they watch the slow deterioration of the person
they love in many aspects of their lives (35). The grief experienced by family members needs to be
considered both in the context of their relationship with the person with dementia and in the context of
the family unit. Every family member’s relationship with the person with dementia is different. Families’
relationships are interdependent and intertwined; while loss affects each person at an individual level,
there is a need to consider that the losses encountered have a wider impact on roles, relationships and
grief on the immediate and wider family context of the person with dementia. Some of the factors which
may affect the grief response of the family are the circumstances surrounding the loss, individual and
familial coping capacities and grieving styles, the availability of extended family and broader relationship
resources to serve as support for the family’s grief, the functional position of the person with dementia
and the level of family cohesion and maturity (35,139).
Anticipatory loss and ambiguous loss are commonly reported by family members as part of the
experience of living with a person with dementia. Remember that loss is unique and subjective to
each person’s experience and relationship with the person with dementia. In order to support you to
develop an understanding of some of the losses which may be occurring for families. Some of the
losses commonly encountered by family members are outlined below:
• Loss and changing roles in the family (140): Being a family member of a person with dementia
can mean the change of a relationship that was central to one’s life and this can lead to a number
of conflicting emotions. Children may experience role reversal and struggle with making that
change. There may be additional or secondary losses associated with dementia such as loss of
employment and income.
• Loss of hopes and dreams for the future (97)
• Psychosocial Loss: The person with dementia’s identity may appear to be so changed that
family have described this loss as the 'death of the person that once was' (3).
• Loss of companionship and intimacy (103,104,141,142): Relationship losses are extremely
significant for both the children of the person with dementia and their spouses.
• Loss of control: over one’s life due to new and ever changing circumstances of living with a
family member who has dementia (97,103,104).
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