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Australian Journal of Dementia Care
June/July 2016 Vol 5 No 3
Family carers play an important role in
assisting people with dementia to continue
receiving care within their home. However,
family caregivers are known to experience
high levels of burden and community
services can offer much-needed support.
Researchers in Queensland have
investigated the uptake of community
services by people with a diagnosis of
dementia. Information was collected from
59,352 people aged 65 years and over who
were receiving home care. The researchers
statistically controlled for demographic
variables (such as gender, date of birth and
pension status) and examined the
relationship between participants’ cognitive
impairment and their use of community
services.
Higher levels of cognitive impairment
were found to be associated with accessing
more hours of respite and day centre care as
well as counselling support. However,
higher cognitive impairment was also
associated with fewer hours of other formal
care services. The researchers suggested that
this may indicate that when clients begin to
experience cognitive impairment, informal
caregivers step in and provide needed
assistance and support.
This hypothesis is potentially supported
by the study finding that the likelihood of
receiving support from an informal
caregiver increased with cognitive
impairment. This finding is not particularly
surprising given that the analyses also
showed a strong association between
cognitive impairment and behavioural
problems* in people with dementia. The
odds of clients with behavioural problems
experiencing cognitive impairment were 27
times higher than those without behavioural
problems. The nature of behavioural
problems such as wandering, sleep
disturbance, aggression and disinhibited
behaviour may require greater need for
individualised care, thus making informal
care a more suitable option.
The researchers concluded that this study
demonstrated there is an increased need for
respite programs to support informal carers
of people with dementia. Further, the
findings of this study support the need for
further research into new and innovative
respite models in the future.
Vecchio N, Fitzgerald JA, Radford K, Fisher R
(2016) The association between cognitive
impairment and community service use patterns
in older people living in Australia.
Health and
Social Care in the Community
24(3) 321-333.
* Editor’s note: While
AJDC
acknowledges
there is debate over the use of terms such
as ‘behavioural problems’ and ‘wandering’ in
relation to people with dementia, our current
editorial policy is to continue publishing
articles that include these terms when it is
clear they are used in the context of the
research or practice being described and
the author’s intent is to promote person-
centred care. However,
AJDC
encourages
the use of terms such as ‘distressed
behaviour’ to underline the importance of
seeing agitation, calling out, aggression,
wandering and disinhibition primarily as
expressions of need requiring an individual
response in each case.
Australian researchers have
investigated the experiences of
young people living in families
where a parent has younger
onset dementia.
A total of 12 young people
participated in semi-structured
interviews about their
experiences. Three key themes
emerged from the interviews.
Firstly, participants spoke of
invisibility, highlighting the
issue of marginalisation. They
spoke of feeling separated from
their usual social environment
due to the changed family
circumstances with their
parent’s diagnosis of younger
onset dementia. They reported
maintaining a level of secrecy
about their parent with
dementia in order to protect
themselves from scrutiny and
stigma outside of the family
home.
The young people also said
they often felt unrecognised
and unimportant, due largely
to society’s view that dementia
only affects older generations.
Young people also reported
that they avoided burdening
other family members, instead
hiding their own concerns,
fears and needs.
Participants also spoke of
stigma, with some parents with
dementia being excluded from
friendships, primarily due to a
lack of understanding about
younger onset dementia.
The young people spoke of
the importance of connectivity,
particularly with family,
friends and social networks.
Positive connections with
family and friends can alleviate
some young people’s concerns
about caring for a parent
through mutual support.
However, connectedness can
be difficult to maintain,
especially in the face of familial
conflict and role reversal (when
the young people begin to feel
as though they are acting in a
parenting role).
Participants said they were
reluctant to seek support from
peers, frequently due to their
general lack of understanding
of having a parent living with
dementia. Receiving a clinical
diagnosis of younger onset
dementia left many families
feeling disempowered and
disconnected from health
professionals. Young people
often perceived health
professionals as failing to
acknowledge the impact of the
diagnosis on the whole family.
Schools or education
facilities can potentially
provide stability when family
life is unpredictable and for
some participants school
routine provided important
consistency and purpose.
However, others found the
school system struggled to deal
with their frequent absences
and what were perceived as
‘acting out’ behaviours during
difficult periods.
Finally, participants spoke of
being empowered through
claiming their basic human
right to receive the age-
appropriate support they need.
Some participants experienced
increased self-efficacy and
advocacy through assisting in
the care of a parent with
younger onset dementia.
Participants also experienced
a greater sense of
empowerment through
opportunities to work in
partnership with organisations.
In particular, the young people
spoke of the importance of
using their perspectives,
insights and expertise to raise
awareness and understanding
of younger onset dementia. A
collaborative advocacy
approach aimed at raising
public awareness of younger
onset dementia and its impact
on young carers was sought by
some participants.
The researchers concluded
that the current plight of young
people living with a parent
with early onset dementia
requires a fundamental shift in
developing inclusive services
across youth and dementia care
sectors.
This calls for a working
partnership between all the
service users responding to the
identified needs of individual
family members.
Hutchinson K, Roberts C, Daly M,
Bulsara C, Kurrle S (2016)
Empowerment of young people who
have a parent living with dementia: a
social model perspective.
International Psychogeriatrics
28(4)
657-668.
Call for united approach to help young people
Greater need for family carer respite