Loss and Grief in Dementia

Section 4
c. transitions encountered by family members of people with dementia
The number and frequency of transitions into different healthcare settings varies for any individual and
each change brings with it a need for new adjustments. These can cause periods of acute grief or ‘grief
surges’ for family members. There are commonly reported ‘pinch points’ when grief is acutely felt.
The figure below is taken from (156) and gives the reader a sense of the key points along the person
and families journey with dementia where grief is heightened.
key pinchpoints When Grief can be heightened for family members
- Noticing symptoms
- Diagnosis of dementia
- Increasing loss of memory and cognitive functioning
- Loss of driver’s license
- No longer can go out alone
- No longer can be left alone
- Help with personal care required
- Need for outside assistance
- Need for respite
- Incontinence
- A change in the person's behaviour
- Caregiver no longer recognised
- Develops connection to another resident
- Changes in the person's communication
- Loss of mobility
- Inability to swallow
- Declining health and end-of-life care
- Death and bereavement
diagnosis
need for support
increases which may
result in placement
in a residential care
centre
Increase in home
care support
death
Family members can experience intense feelings of guilt, particularly when there is a need for external
involvement in the person’s care such as beginning to engage with home help services, going to
respite or going into a nursing home. They can feel guilty if the person is unsettled, they can compare
themselves to others and their ability to cope, they may find it very hard to see the person very settled
in a new environment or having good relationships with healthcare staff when they had been very
unsettled at home (157). It is vital to be sensitive to families at this highly emotional and stressful
time. What may seem like an angry/ pedantic family member may in fact be a person trying to exert
some level of control over a situation which is intensely stressful and overwhelming for them.
Moving into a long term care setting is a time where family members experience acute or heightened
grief reactions (141,158). Many family members can be overwhelmed with feelings of guilt, loss and
grief. Healthcare staff and family members can often misinterpret each other’s communication, or
each other’s motivations and this is a common source of complaint in healthcare settings (159). It is
extremely important to support family carers to continue to be involved and connected with their
relative and provide emotional support to help them positively adapt to their new situation (160).
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Loss and Grief in Dementia