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Quality respite and counselling services
must be readily available to ensure people
living with dementia, their families and
carers can maintain their relationships as
dementia progresses, a new discussion
paper has found.
Relationships and Dementia, released
in June by Alzheimer’s Australia NSW,
highlights the importance of a society
that recognises, acknowledges and
understands that people impacted by
dementia face relationship difficulties and
challenges, and provides support to enable
people to work through complex feelings
of grief and loss.
Alzheimer’s Australia NSW CEO
The Hon. John Watkins AM says that
although family relationships are already
complex, living with dementia increases
this complexity. Therefore, as the disease
progresses, relationships will need to be
reframed and renegotiated.
“Dementia affects the roles people hold
within the family,” he says.
“If a person with dementia was
the provider and decision-maker, or if
responsibilities were shared, that role is then
taken on solely by their spouse or children.
“A child caring for their mother or father
might feel the role is reversed – that they
are now parenting their parent. A spouse
caring for their husband or wife might
also feel grief for the loss of their life
companion, their confidante.
“Dementia has a significant impact
on an individual’s identity within the
relationship, which inevitably affects a
person’s feeling of worth.”
Kate took part in the research for the
discussion paper, having cared for her
husband Bill, who was diagnosed with
frontal lobe dementia. Meeting in their
forties, Kate and Bill had a loving and
communicative relationship but, as Bill’s
dementia progressed, Kate experienced
intense loneliness and isolation as the man
she knew and loved changed.
“Bill lost the ability to communicate well
verbally quite early on in his dementia, which
was a real loss to both of us, because we
had always been a couple who talked a lot to
each other,” Kate says.
“As an industrial designer, Bill also
struggled to live life as he always had and
became increasingly frustrated. One of
the most challenging things was keeping
him occupied with meaningful activities.
Quality respite services are vital for people
living with dementia, particularly those with
younger onset dementia like Bill, who was
healthy and physically active.”
Research conducted by Alzheimer’s
Australia NSW revealed that couples who
have previously had a long emotional and
physical relationship experience great
sadness when that sexual intimacy and
connection is lost.
“When a partner is moved into residential
care, for those couples who still share a
physical relationship, this can create further
challenges to that bond, particularly regarding
issues of privacy, as a spouse might be
sharing a room with others,” John says.
For Kate and Bill, their physical intimacy
continued and proved important in the later
stages of his dementia.
“A hug, holding hands or a loving caress
brought calm and nurtured our connection.
Intimacy was difficult for us when Bill moved
into the nursing home, however. Sharing a
room with three other men meant it was
hard to find space to have a cuddle or listen
to music,” Kate says.
John says residential aged-care facilities
need to provide adequate support and
privacy for people with dementia and their
partners to enable them to maintain their
relationships with dignity, which is crucial for
both of their wellbeing.
A copy of the discussion paper, along
with the full list of recommendations,
can be found on the Alzheimer’s
Australia NSW website at: https://nsw.
DEMENTIA AND RELATIONSHIPS
INCREASED SUPPORT IS NEEDED FOR PEOPLE AFFECTED
BY DEMENTIA TO HELP THEM MAINTAIN RELATIONSHIPS.
1The Australian Government to
fund quality respite services to
support carers to continue caring for
loved ones with dementia at home
and avoid premature entry into
residential aged care.
2The Australian Government to
increase funding for counselling
services for people with dementia
3The Australian Government
to fund a pilot program of
telephone-based support groups
for carers of people with dementia
(especially for people from rural and
4The Australian Government
to fund further research and
on the impact of dementia on
relationships in order to improve
provision of targeted, relevant
5Residential aged-care facilities to
provide support to people living
with dementia and their carers to
maintain relationships and enable
opportunities for physical intimacy
within aged care homes. For
example, organisational policies and
staff training to address these issues.
In the Winter 2017 issue of In Touch
the key figures for NSW were
incorrect. They should have read:
The number of people with
dementia will grow from
138,700 in 2017 to 175,000 by
2025 and 326,000 by 2056.
We apologise for any distress
caused by the publishing of these
Kate Williams and The Hon. John Watkins AM
15/8/17 3:31 pm
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