By 2030,
80,000 Singaporeans are expected to have the disease. Many suffer in silence
amid poor quality of life. Palliative care in advanced dementia can help.
One of
the difficulties I face as a geriatrician is the sense of helplessness in
addressing the challenges experienced by my patients living with dementia.
Contrary
to popular belief, dementia is not part of the normal ageing process. It is an
incurable neurodegenerative disease which causes sufferers to lose their
autonomy and identity.
Dementia,
of which the commonest form is Alzheimer's, has no regard for social class,
education or affluence, afflicting people from all walks of life. Memory and
basic functional loss erode individual independence and dignity. In its
advanced stages, patients eventually require care for basic needs and are often
bedbound.
In 2012,
about 28,000 people in Singapore aged 60 and older had dementia. The number is
expected to soar to 80,000 by 2030. The number will increase with Singapore's
ageing population, as the odds of developing dementia increase as one grows
older. Singapore's economic, social and healthcare burden from dementia is
estimated at $1.4 billion annually.
Patients
with advanced dementia have poor life expectancy. In an effort to prolong life,
many are tube-fed or placed on intravenous drips. Some are restrained to
prevent self-harm. Unfortunately, these well-meaning treatments rarely improve
survival, while severely impacting the quality of life.
It is
therefore imperative that we put in place interventions which focus on helping
patients live and die with dignity.
An
approach that deserves more attention is palliative care. Widely used in
managing serious conditions like cancer and end-stage organ illnesses, it
focuses on improving the quality of life for patients and their families by
alleviating pain and suffering at any stage of a life-threatening illness.
Palliative
care can be administered alongside existing care plans, ensuring that patients
continue to
live
comfortably, even with advanced illnesses.
But
palliative care in dementia treatment is undersubscribed.
One
reason is that advanced dementia is not traditionally viewed as a
life-threatening illness. Neither is dementia a certified cause of death in
Singapore. This is in contrast to places like England and the United States,
where dementia is the second and sixth leading cause of death, respectively.
Another reason is that dementia progression is notoriously hard to predict,
making it difficult for healthcare professionals to pinpoint an appropriate
time to recommend palliative care, if at all.
For
example, advanced dementia patients are incapacitated by severely diminished
mental faculties and their world becomes progressively silent as they lose the
ability to express themselves.
In the
last year of life, 83 per cent of patients experience confusion, 72 per cent
are incontinent, while more than half suffer constipation and reduced food
intake. Some 64 per cent of patients also experience significant amounts of
pain - akin to late-stage cancer sufferers.
These
symptoms are often not recognised or addressed. This, coupled with frequent
hospital visits from recurrent infections, leads to poor quality of life in the
final days.
Caregivers
undergo considerable emotional and physical stress having to watch their loved
ones suffer, while struggling to cope themselves.
There
needs to be greater awareness and education of the suffering of advanced
dementia patients and caregivers among the healthcare community and public, and
the eventual upscaling of resources to support patients and families in the
community. More innovative strategies can help provide cost-effective care
across different healthcare settings.
One such
method is home-based palliative care. Dover Park Hospice and Tan Tock Seng
Hospital jointly developed a pilot programme funded by Temasek Cares, one of
the philanthropic organisations under Temasek Holdings, to address the needs of
advanced dementia patients and their caregivers at home.
The
programme builds on existing homecare models and tailors palliative care
protocols to dementia sufferers. Disease-based, but needs-specific, the programme
evaluates patient comfort and caregiver well-being through internationally
validated dementia-specific measures.
As
patients are not able to clearly articulate distress, discomfort is evaluated
through non-verbal cues such as facial expression, body posturing,
vocalisation, breathing pattern and response to comfort and care. Challenging
behaviours may also be a surrogate expression of physical or emotional
distress.
Caregiver
awareness and environmental and medication changes can be adapted to respond to
these cues, to relieve distress and improve quality of life.
Teams
comprising nursing, social work, geriatric and palliative specialists make
regular home visits, where they use dementia- specific measures to gauge pain
and suffering in patients. The team also supports families by helping them
anticipate changes in care, and advising caregivers on coping with adjustments
in physical and emotional well-being along the way.
In
addition, the team acts as an intermediary, liaising with hospital, hospice and
home, and simplifying the administrative process for caregivers. After-hours
support is provided through an emergency hotline.
Since
October 2014, Temasek Cares-Programme Dignity has helped over 200 patients with
advanced dementia. Patients are referred to the homecare team by their
physicians in Tan Tock Seng Hospital, in consultation with their families.
With this
support, patients can remain at home, in a familiar, non-threatening
environment, surrounded by loved ones. Caregivers, whose physical and emotional
needs are often overlooked, are, in turn, supported by the homecare team.
However,
the challenges of providing such services within the community are all too
real. Dementia care is complex, requiring specialised training. In addition, a
comparative lack of resources and funding in the community makes homecare work
extremely demanding.
The
current pilot shows the benefits of a collaborative care model involving tertiary
hospital, homecare team and hospice. Such a model of care can potentially be
replicated in the other regional healthcare systems in Singapore.
As our
population ages, palliative care has to be expanded to match disease-specific
needs. Healthcare providers have to be skilled in managing multiple complex
end-stage conditions across various healthcare settings, including in the home.
We need
to develop and expand disease-specific palliative homecare teams, equipped with
the necessary medical and allied health expertise to support caregiving at home
throughout Singapore. Members of the community can also do their part to
provide emotional and social support to families in need.
In caring
for our vulnerable elderly, Singapore must do better.
Allyn Hum
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