The experiences needs and outcomes for carers of people with dementia

Executive Summary
However it cannot be assumed that this will result in
better outcomes for all family members.
• Poor relationship quality may result in conflict and
disconnectedness.
• Changes occurring as a consequence of dementia
include loss of companionship, shared interests and
mutual support, but research also suggests that love,
warmth and affection are still possible.
• Dementia often also involves a change in the
relationship itself, moving from partners or parent
child to carer and cared for, frequently such changes
require a complex process of negotiation between
family members.
• Some family members seek to support the person
with dementia to retain their roles and their identity for
as long as possible.
• Open communication is necessary within
relationships to support adaptation to the challenges
dementia brings.
The impact upon individuals
Evidence on the impact and experience of dementia
for individual family members is variable, with studies
on spouse and adult children (usually daughters) being
more frequently found. However research indicates both
similarities and differences in the experience for individual
family members, necessitating that their experiences and
needs are considered separately.
The person living with dementia
• The experience of dementia can render people
vulnerable to their psychological defences being broken
down, meaningful and supportive relationships are
essential to the maintenance of wellbeing.
• People with dementia are active in seeking to adapt to
live with dementia, which includes developing practical,
emotional and relational strategies.
• Changes in functioning occur from early in the
experience of dementia and progress, people
with a diagnosis describe the importance of
remaining independent and actively seeking ways
of adapting to the difficulties, demonstrating the
continued importance of a sense of agency and
control over one’s life and maintaining valued
activities and occupation.
• Research suggests that decreases in wellbeing of
the person with dementia correspond with increases
in stress and distress experienced by their family
caregivers. Thus interventions which involve
improving the well-being of people living with
dementia alongside their family caregivers are likely
to be an important factor influencing outcomes.
Spouse/Partners
• The experience of caring for a spouse/partner is
intrinsically related to the relationship in which
caring takes place.
• Caring often takes place in the context of a long
established relationship characterised by degrees
of commitment, satisfaction, and sharing of roles.
Consequently, many spouses/partners may not view
themselves as carers.
• Relationships between spouses/partners can
increase the risk of or protect the family member
from experiencing poor mental health as a
consequence of caregiving.
• Spouses/Partners may invest considerable energy in
providing care, and may do so to the detriment of
their own wellbeing.
• There are gender differences in caregiving in
this context, which will influence the type of
coping strategies used and the support that they
wish to receive.
• Spouse/Partner caregiving involves both satisfactions
and costs.
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