Loss and Grief in Dementia

Guidance and Resources
b) Supporting families as the person with dementia enters their final days/ weeks of life
“We weren’t told that she was going to die. We should have been told. We didn’t
realise that her death was so close – it came as a shock” Family member , personal communication.
Family members often journey through dementia with their family member and witness a slow
deterioration in their relative’s abilities over a long number of years. People dying with dementia have
an ambiguous/ uncertain trajectory towards death which can lead to difficulties for healthcare
professionals in recognising when the person is dying (19,20,166). As a result, families may be
unprepared for their relative’s death and key discussions with family members may not often take
place in time. There is an association between being unprepared for death and higher levels of grief
and depression in bereavement and it is therefore essential that families are kept informed at all times
of their relative's condition (167).
It is important to note that as a person with dementia reaches the end of their life and becomes
dependent on others for all aspects of their care, the emotions of family members can be fraught.
Difficulties with service provision such as poor communication/ difficulties with decision making or
routine care being delivered in a way which is not congruent with the person with dementia’s will
and preferences can become emotionally charged due to the grief which is mounting for family
members (168). The extent to which family members can engage with the person with dementia
before they die is also seen as an important aspect of shaping the experience of their death and have
an impact on their outcomes when they are bereaved (105).
Clear open lines of communication between healthcare staff and family which address knowledge,
emotional needs and practical planning are of utmost importance and may facilitate the management
of uncertainty and preparation for death (161,169). Knowing when a person with dementia will die
is difficult so discussions need to take account of the fact that the person may or may not die within
days but that the prospect is becoming more likely (170). Drawing the family together to discuss
their current situation, formulate care plans and talk about their feelings may help to mobilise family
resources and prove helpful in bereavement (108).
Tips on how to best to support families at this time is given below:
SuppORtInG fAmILIeS AS tHe peRSOn WItH
dementIA enteRS tHeIR fInAL dAYS/WeekS
1. Communicate openly and sensitively with the family about the person with dementia’s
condition within your own scope of practice and role. Maintain open lines of communication.
You may do this in many ways such as giving the family a key contact person and a phone
number and ensuring that the healthcare team checks in with the family regularly.
2. Facilitate a family meeting to ensure a shared approach to the person with dementia’s care
and to talk about their feelings relating to the situation.
3. Provide emotional and spiritual support for the family during the person with dementia’s
final days by:
• Recognising, acknowledging and validating emotions
• Providing support which the family requires (this may be practical, spiritual or emotional)
• Signpost family members to information and supports they may need
Loss and Grief in Dementia
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