Loss and Grief in Dementia

Section 4
b. Recognising Loss and Grief in family members of people with dementia
Family members may confuse grief with stress and may only recognise their emotions as being a
manifestation of grief after they are explicitly told that is what they are experiencing (143). Some
family carers will not accept/ allow themselves to grieve. This is called self-disenfranchisement -
where a family carer feel it is unfair to their relative or 'self-indulgent' for them to grieve (144). This is
particularly the case when the person with dementia is still living. Some of the commonly reported
feelings of family carers of dementia in the literature are as follows:
• Despair
• Chronic sorrow and heartfelt sadness for the person with dementia (98)
• Anxiety (34)
• Worry and isolation (98)
• Anger (141)
• Frustration (97,145)
• Guilt (97,146).
• Confusion and mixed emotions: many people with dementia can vary hugely in how they
present each day. They may have episodes of lucidity where they seem more verbal, connected
and insightful only to revert back to struggling with communication and this can lead to difficult
and confused feelings for family members (147). Day to day variability in the person with
dementia’s presentation can be especially difficult to cope with.
Some family members may refuse to accept the losses which dementia brings and deny the effects
of the disease and try to retain the person who once was. This can be problematic where a family
may presume that the person has control over their behaviour (34,35).
Another factor which has a profound impact on the grief response of individuals and families is the
experience of caregiving. The nature of dementia and how it progresses means that some family
members will gradually increase their level of care for the person with dementia and take on the role
of a family carer. The experience of caregiving can result in both positive and negative outcomes for
family members (148). Some of the negative outcomes which can result from this experience are
social isolation, burden, depression, emotional and physical strain, poor physical health and a
decreased ability to work (149–151). Positive aspects of the caregiving role include gaining a sense
of meaning, satisfaction, well-being and improved quality of relationships (142,152–154). These
positive aspects of caregiving can act as a source of hope and may help to sustain family carers in
their work (154). When a person with dementia dies, many family carers experience the primary loss
of losing their loved one in addition to secondary losses which are associated with the caregiving
role such as loss of a meaningful and fulfilling role, loss of social contact with healthcare staff involved
in the person’s care and loss of routine (140).
It is essential that you pay attention to relationship losses and the unique nature of the losses encountered
by family members and be aware that these losses can differ significantly depending on whether the
relationship with the person with dementia was that of spouse or an adult child (32,145,146,155).
Spouses are more intensely affected than adult children (141) and this grief increases as the person
with dementia’s condition deteriorates (35). The table overleaf is taken from Adams et al (146) and is
intended to be used to inform and guide your practice on some of the differences which you may
encounter between adult children and spouses in your work. Please remember that each person is unique
and this is intended to aid your learning. Always be guided by the people you work with in relation to
their unique perspectives and meet a family where they are at.
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Loss and Grief in Dementia