Loss and Grief in Dementia

Section 4
a) Supporting families when they are directly caring for their family member with dementia
“It’s a paradox. Something is lost but something is not lost. So I started to look for
things that were still part of my mom. My mom still has a sense of humour and I can
still share a laugh with her. She still has an emotional part to her so I zero in on the
emotion of the event because it’s on a level where she gets it. She may forget my
name but she knows who I am” (Daughter quoted in (50)).
It is important when beginning a new relationship with a family that you actively seek their unique
knowledge and input and agree on a way of working and communication which will work for both of
you. Discuss expectations and what is feasible in terms of a point of contact (157). Remember to always
value a family members role and do not strive to take over completely (162).
Family members are a huge source of information and support for healthcare staff and have a key role
to play in supporting the person with dementia to maintain their identity and connection to the things
which matter to them. (163).
The profound transformations that occur amid the losses and grief can give rise to new hope, purpose
and meaning in the lives of family carers (31). Paradoxical thinking can be a helpful way to support
families to explore, learn to tolerate or live with the many uncomfortable ambiguities of the disease.
This involves acknowledging the range of feelings that are going on simultaneously (31). For example,
a spouse may feel married on the one hand to their spouse with dementia and not married on the
other. They may love the person deeply and yet be angry or hurt in relation to some of their reactions
and behaviours. This causes confusion and can cause a lot of mixed emotions. It is important that
family members learn to recognise, understand and hold the paradox and accept two opposing ideas
at the same time (50).
Helping family members plan for their future can be supportive and help them to cope with current
losses and anticipate their life as it may be in the future.
SuppORtInG fAmILIeS WHO ARe dIReCtLY CARInG
fOR tHeIR fAmILY memBeR WItH dementIA:
1. Communicate openly and honestly with the person and their family.
2. Offer the family information and education about:
• Dementia and what to expect as the condition progresses
• Losses which commonly occur for family members and the range of grief reactions
which can occur (164).
3. Encourage family members to engage in paradoxical thinking as a way of understanding
and coping with living with dementia.
4. Support families to anticipate and plan for the future as appropriate to them.
5. Support the family to engage with the person with dementia in creative ways - this can
often be a good way to maintain and develop new connections together (31).
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Loss and Grief in Dementia