Dementia

Pre-diagnosis Diagnosis Post-diagnostic
support
Co-ordination
and care
management
Community
services
Continuing
care
End of life
palliative care
Public awareness
of the disease, its
symptoms and
where to go for
help if someone is
worried that they
may have dementia
Receiving the
diagnosis
Information and
support for the
person with
dementia and their
family caregivers
to enable them
to come to terms
with the disease,
plan for the future
and make the best
use of their current
circumstances;
continuing to do
what they can
still do and not
concentrating on
declining abilities
Assessing
(and regularly
reassessing) the
needs of people
with dementia
and arranging
care in conjunction
with them and their
caregivers
This is when
care is needed at
increasingly short
intervals, behavioural
and psychological
symptoms become
more prevalent and
the person with
dementia is less
able to care for
themselves; care
may be provided
in the person with
dementia’s own
home or community
facilities
Care is needed
continuously,
unpredictable or
behavioural and
psychological
symptoms become
more demanding;
this stage should
also include
when people with
dementia require
hospital care for
whatever reason
This is the special
form of continuing
care when a person
with dementia is
close to the end of
his or her life
The co-ordination and care management stage should apply throughout the journey of dementia care from diagnosis to palliative care.
FIG 4.2 Seven-stage model for planning dementia services (3)
Long-term care services
Effective coordination of ongoing health and social care services
after diagnosis is vital for achieving improved quality of life for
people with dementia and their caregivers beyond the pre-diagnostic
and diagnostic phases which are health-system based. A wide
variety of services for post-diagnostic support, community services,
services for continuing care and end-of-life palliative care are
also essential (Figure 4.2).
The term “long-term care” is often used to describe the range of
services which help meet both the medical and nonmedical need of
people with a chronic illness or disability who cannot care for
themselves. Long-term care includes:
• post-diagnostic services: planning for the future; offering
support, advice and information as needed; and helping maintain
independence;
• community services: helping people with dementia to remain at
home as long as they wish and until it is no longer possible, and
providing short breaks / respite care to support caregivers and
providing an opportunity for social engagement for the recipient.
• continuing care: caring for people who can no longer stay at
home (e.g. in different kinds of supported or institutional living
arrangements such as group homes and residential care), and
providing for the end stages of dementia.
As the aims are interlinked, coordination is required across the
range of services to provide a seamless response and a partnership
approach. Long-term care can be both formal and
unpaid / informal. Unpaid care is the care provided by family and
friends. Formal care is care provided by paid caregivers and can
include nursing care and personal care provided in a care home or
domiciliary setting.
The majority of people with dementia live in their own homes in the
community. Moreover, most people would wish to remain living in
their own homes for as long as possible. This message is consistently
given by the public, by older people generally, and by people
with dementia specifically. In addition, economic research carried
out in high-income countries has shown that the largest cost driver
for dementia is the cost of institutional care (3).
Most high-income countries are moving, or trying to move, away
from the institutional traditions of the early part of the past century,
not only for major mental disorders but also for the care of older
adults (with health problems). States now prioritize communitybased
care systems. It is estimated there are 266 574 people with
dementia in Australia in 2011. This is projected to increase to
553 285 people by 2030, and 942 624 people by 2050 (182). In
response, Commonwealth and State Australian governments have
developed comprehensive plans and systems including expansion
of community care services and packages, improvement in quality
of residential care and initiatives to address behavioural and psychological
symptoms of dementia (183). Some countries, including
Japan and Sweden, have introduced small group homes as an
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