Home' Australian Ageing Agenda : AAA Spt-Oct 2013 Contents clinical depression or other mood
disturbance or disorder. These lend
themselves well to specific psychological
interventions. It may also be helpful to
identify any factors that might suggest a
serious risk of psychological disorder or
distress (for example, social isolation or a
history of psychiatric hospitalisations).
But all of us can observe and subjectively
report distress that we feel is psychological
in nature (fear or anger) or psychologically
mediated (pain or breathlessness), even
if it may not meet the criteria of a discrete
psychological disorder. We should also look
for opportunities to minimise or prevent
predictable areas or times of vulnerability
and hardship (eg. similar patterns of
ill-health, pre-bereavement work or
anniversary calls to the bereaved).
THE CULTURAL CONTEXT
The cornerstone of practice in palliative
care is the holistic approach, exemplified
by the management of 'total' pain. This
classically includes physical, psychological,
social and spiritual pain. Pain or distress
related to cultural context can be expressed
through any of these dimensions.
Often closely allied to culture, are
spiritual and religious beliefs that have
a bearing on how people approach
and understand their disease. In many
societies, people define themselves by their
religious, cultural or tribal grouping, even
when their faith or immersion in religion or
culture is limited. There are wide variations
between people of differing faiths, ethnic
backgrounds and national origins and their
approach to the end of life.
To act appropriately in caring for people
from a different culture to our own, it is
imperative to understand the expectations
of that culture. We need to ask people
individually what they need to make a
difference to the end of their life. That
asking must acknowledge difference --
difference in culture, in religious beliefs, in
understanding of the nature of disease, in
expectations in a particular situation and in
perceptions of hope at the end of life.
THE SEXUAL CONTEXT
Sexuality is an element easily sidelined
or overlooked when caring for people at
the end of life, particularly if the person is
elderly. It is too often assumed that because
people approaching death are weak and
tired, that their sexual needs are minimised.
This fails to recognise the many ways in
which human beings can express their
sexuality aside from sexual intercourse.
Staff often view people's sexual
interests as 'behavioural problems' rather
than natural occurrences or expressions
of need for loving contact. Many people
approaching the end of life with dementia
have had a relentless decrease in their
physical being for some time. In helping
people address their sexual needs and
wishes, we need to acknowledge that all
people are sexual beings in the same way
that they are physical or emotional being.
While hope for the dying person is
not necessarily connected to cure,
there is empirical evidence that health
professionals still associate hope with cure
or lack of progression of disease. This is
particularly relevant when considering
people who are dying from dementia,
RESTORING CREATIVITY to the dying person has long been an important goal of palliative
care teams. Both music and art therapy are useful adjuncts in the management of people near
the end of life and can have a very positive impact on their psychological or social wellbeing.
From a psychological point of view, music therapy can help to identify or reinforce
self-worth, improve the person's mood, help with recall of past significant events and
also help in exploring fantasy and imagery. From a social point of view it can serve as
a link to the person's life before illness and as entertainment and diversion. It can also
act as a means of socially acceptable self-expression, recreating a bond and a sense of
community with family members.
Art therapy can include all forms of creative and interpretative expression. Some
aspects of the arts which have been used successfully in the management of symptoms
near the end of life include biography work, journaling, reminiscence therapy and poetry.
We can make a difference
END OF LIFE CARE for people with dementia, regardless of the severity, needs to encompass all of their needs, not just the physical needs
that are more readily recognised. All people who are dying (and perhaps all of us) will have a need for:
• Understanding - of symptoms and the nature of disease and of the process of dying. We should try to explain what is going on.
• Acceptance - regardless of mood, sociability and appearance. Does it matter if we are in a bad mood? If we know we are dying, we have
every right to be sad.
• Self-esteem -- involvement in decision-making. Ask each person if they want to be involved if they can.
• Safety -- a feeling of security.
• Belonging -- a wish to feel needed and not to feel a burden. So often our society seems not to value those who are the most sick and weak.
• Love -- expressions of affection, human contact (touch). We all need this at some point in our lives.
• Spirituality -- an explanation of meaning and purpose, both religious and non-religious.
• Hope -- for an improvement in any aspect of their life or of their living.
Australian Ageing Agenda's regular
dementia supplement is guest edited
by Colm Cunningham, director of
HammondCare's Dementia Centre.
For further information, email
where the hope of cure is elusive. The
ability to maintain hope is enhanced by:
• effective relief from distressing symptoms;
• a team of positive, professional staff who
can provide meaningful relationships
with the patient;
• the perceived existence of a positive
future for the person and his or her family;
• the person feeling that he or she is
valued as a person ;and
• the redefinition of the person's goals as he
or she moves through the disease process.
There is a serious risk of losing hope if
there is a loss of control that threatens the
perception of any future. Therefore, social
and psychological interventions can be
useful to support positivity and help retain
hope -- something we can all contribute to.
Attention to detail is often the key. n
Prof Rod MacLeod is Senior Staff
Specialist, HammondCare and Conjoint
Professor in Palliative Care -- University
of Sydney. He is a keynote speaker at the
HammondCare 2014 International Dementia
Conference: Risky Business 2.
dementia is often
silent, slow and
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