Antea Worldwide Palliative Care Conference

Rome, 12-14 November 2008

ABSTRACT FORM

Presenting author TITLE: UNDERSTANDING AND SUPPORTING FAMILIES OF PATIENTS WITH

ADVANCED DEMENTIA NEAR THE END OF LIFE.
Marcel Arcand
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abstract
• Pain and other symptoms
• Palliative care for cancer patients
• Palliative care for non cancer
patients
• Paediatric palliative care
• Palliative care for the elderly
• The actors of palliative care
• Latest on drugs
• Bureaucratic pain
• Illness and suffering through
media
• Marginalisation and social stigma
at the end of life
• Palliative care advocacy projects
Most experts think that advanced dementia should be considered a terminal disease for which a
palliative care approach is relevant. When medical complications occur, family caregivers are
often required to participate on behalf of loved ones to difficult clinical and ethical decisions.
Research has shown that many family members do not feel well prepared for this potentially
stressful period and need support.
To maximize family support and avoid potential conflicts, a good understanding of family
perspective is crucial for physicians and other healthcare professionals. Using qualitative research
methodology, we have examined the concerns of family caregivers regarding their relative’s care
and explored how end-of-life treatment decisions are made. Their perception of the relative’s
level of quality of life emerged as central to decision-making. Families also perceive in differing
ways their role in the decision-making process.
A review of interventions to support families of advanced dementia residents of long term care
institutions shows that discussion of advance directives appears not only to promote better
concordance between patient’s prior stated wishes and treatments received but also lessen
discomfort at the end-of-life. Palliative care training of nursing staff and physicians seem to
improve communication between family and healthcare team and global family satisfaction with
care. Family education about progression of disease and the palliative/comfort care option has
not been much studied. Recently, we wrote a booklet entitled “Comfort Care at the End of Life for
Persons with Alzheimer’s Disease or Other Degenerative Diseases of the Brain: A Guide for
Caregivers”. The booklet is still a work in progress. Acceptability studies by professionals and
family members are ongoing. Researchers in different countries, including Italy, have adapted its
content to their own cultural and legal context.

• Prognosis and diagnosis

communication in
different cultures
• Communication between doctor-
patient and patient-
equipe
• Religions and cultures versus
suffering, death and
bereavement
• Public institution in the world:
palliative care policies
and law
• Palliative care: from villages to metropolies

• Space, light and gardens for the terminally ill patient

• End-of-life ethics
• Complementary therapies
Session: Palliative Care for elderly
• Education, training and research
• Fund-raising and no-profit Chair of the session: Dott. Donatella Carmi Bartolozzi
• Bereavement support
• Volunteering in palliative care