Loss and Grief in Dementia

Guidance and Resources
The grief reactions of people with intellectual disabilities are generally in keeping with those expected
within the general community (78, 79). For people with intellectual disabilities, grief may:
• Be expressed in unconventional ways due to communication difficulties, meaning it may not
be recognised as grief (80).
• Be delayed and be of longer duration (81).
• Be converted into physical reactions such as nausea, stomach pains or headaches (79,82).
• Be disenfranchised due to societal views about the person with intellectual disability’s ability
to experience emotions loss or grief (83,84).
There can often be a significant amount of staff or family discomfort about upsetting the person or staff
not feeling equipped to have supportive or therapeutic conversations with people with intellectual
disabilities who may communicate differently (85). Those who have a diagnosis of dementia are often
not told of their diagnosis, which can cause people upset and confusion as many people with intellectual
disabilities have awareness that changes are occurring for them (86-88). Additionally, people with
intellectual disabilities are more susceptible to experiencing secondary losses such as a move of
residential centre following a diagnosis or a death in the family/ changes in day service provision.
Finally, the living situations of many adults with intellectual disabilities in Ireland currently tend to be in small
group-based community homes (89). In these homes, people with intellectual disabilities may be living
together over the course of their lives and can build up deep-rooted connections with one another. This
means that for people with intellectual disabilities and dementia, the support needs of their peers/
housemates need additional emphasis. It is important to facilitate open and honest discussions to address
concerns within a household when there are losses and changes occurring. Peers who have a sense of
what is happening to the person with dementia tend to have more supportive attitudes to the person with
dementia, particularly where they have had long term relationships with the person with dementia (90).
All of the points raised above require consideration and development within services to support
people with intellectual disabilities and dementia in addition to people with intellectual disabilities
sharing accommodation with those who develop dementia with issues relating to loss and grief.
people with young onset dementia:
It is estimated that there are approximately 4000 people living with young onset dementia in Ireland
in 2016 (25). People with young onset dementia are more likely to be in employment at the time of
diagnosis, have dependent children and/or elderly parents and have financial commitments such as
a mortgage (83). People with young onset dementia often have to retire from work prematurely along
with their carers leading to a double loss of income along with other losses related to independence
and autonomy (84). More than 71% of people with young onset dementia experience anxiety and up
to 50% experience depression as part of their experience of living with dementia (85). There is a
need to recognise that people with young onset dementia have different needs to other groups of
people with dementia. Their experience of dementia and the loss and grief that is part of that
experience may be very different and require additional emphasis and planning within services in
order to ensure that they are supported in a meaningful way.
The guidance overleaf outlines how to support a person with dementia experiencing loss and grief.
This is followed by resources and information about loss and grief in a person with dementia to
support your development and learning.
Loss and Grief in Dementia
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