Loss and Grief in Dementia

Guidance and Resources
InfORmAtIOn And ReSOuRCeS tO SuppORt GuIdAnCe 4.2
a. Be aware of the types of losses encountered by a person with dementia
"I grieve being unable in these moments to be who I have been. It would be nice if
one could grieve such losses once and be done with it. But grief keeps popping up
in many ways in many situations" (75).
As illustrated in the figure below, a person with dementia can experience losses which relate directly
to their experience of living with dementia in addition to many other losses which can occur in their
lives such as the loss of a loved one/ illness/ the loss of a pet etc. (30). All of these losses are
interconnected and are unique to each person. It is important to respect each person's individual
story and set of circumstances and that you do not assume anything.
A person with dementia has to simultaneously deal with the practical and everyday changes which
dementia brings in addition to processing and adjusting to the ongoing profound and multiple losses
they are experiencing (105). With each new transition point or change which dementia brings, grief
may be heightened for the person with dementia.
Losses related to
the experience
of living with
dementia
Other losses
experienced in life
(e.g. illness/death of
loved ones)
person
with
dementia
Some of the many losses which are commonly reported by people with dementia are as follows:
• Loss of memory (95,96): The impact which loss of memory has on all aspects of a person’s
life is profound. Memory is what links us together –our histories and relationships are built on
a shared history. Dementia can mean that those shared memories and stories are difficult to
track and the person’s ability to engage with others and the world around them is significantly
altered as their condition progresses.
• Loss of independence and personal freedom (97,98): in the early stages of living with dementia,
the person may need additional support with tracking appointments, medication etc. Loss of
independence may impact driving, financial independence, the ability to handle all aspects of one’s
own life. Towards the later stages of dementia, the person will become increasingly dependent
upon others to support them with basic activities of daily living such as dressing, eating etc.
• Loss of roles and identity (35): the person with dementia’s roles in relation to others in their
family and in their wider community and workplace will change as their dementia progresses.
This can mean many different things - the loss of being an equal partner in a relationship, loss of
being in a parent role with children or the loss of being a figure in the community/ at work etc.
Loss and Grief in Dementia
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