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Feature Article

Death, dying and dementia – a pivotal role for the GP

SUE MARKHAM, TIFFANY JESSOP, Carmelle Peisah
OPEN ACCESS

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Abstract

Identifying patients nearing the end of life is important so that patients, families and their GPs can prepare and work together to provide quality care and comfort to the patient according to their wishes and preferences.

Key Points

  • Dementia is a chronic, neurodegenerative, terminal illness with widely variable survival times of three to 12 years that make predicting death difficult.
  • Throughout the course of dementia, the goals of care should be to improve quality of life, maintain as much function as possible and maximise the person’s comfort.
  • A palliative care approach for patients with dementia should be implemented in a timely and personalised way, not in the last few days of life but in the last 12 months or even earlier.
  • The Gold Standard Framework is aimed at helping to identify people in the last year of life, and to assess their needs, symptoms and preferences and plan care on that basis.
  • An advance care plan needs to be distinguished from a legally binding advance care directive made by the patient; in many ways it can be more helpful because it is dynamic in accordance with the person’s needs.
  • The key to managing behaviour change in patients with dementia is to work out the underpinning biological, psychological or social/environmental cause(s), including unmet needs.
  • Effective pain management can not only provide relief from pain, but also relief from agitation in people with dementia.

What constitutes quality care at the end of life for terminal illnesses such as cancer is well defined. However, the needs of people living and dying with dementia are very different, and barriers to providing quality palliative care in this context are challenging for a number of reasons, not the least being the lack of recognition of dementia as a terminal illness and misinterpretation of what palliative care means. Considering the progressive functional and cognitive decline associated with dementia, it is essential to plan ahead for end-of-life care while the patient can still contribute to decision-making relating to their care. GPs are well placed to have these early discussions as they know the patient and their family well, and although not easy in practice, patients look to their GPs to initiate these conversations.

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Dementia is a terminal illness. In Australia in 2017, dementia was the leading cause of death in women and the third leading cause of death in men.1 Dementia shortens life, although progression is widely variable depending on the timing of diagnosis, the disease type and comorbidities.2 Healthcare professionals therefore need to be skilled and prepared in dealing with dementia at the end of life. Management of death and dying in dementia is intrinsically part of the clinician’s role, particularly for GPs who are usually in it for the long haul with their patients.

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Ms Markham is a higher degree Research Student at UNSW Sydney; and Senior Research Assistant at Capacity Australia, Sydney. Dr Jessop is Manager and Empowered Project Coordinator at Capacity Australia, Sydney; and Centre Manager at the Dementia Centre for Research Collaboration, UNSW Sydney, Sydney. Professor Peisah is President of Capacity Australia, Sydney; Conjoint Professor in the School of Psychiatry, UNSW Sydney, Sydney; Clinical Associate Professor in the Discipline of Psychiatry, The University of Sydney, Sydney; and Old Age Psychiatrist, Sydney, NSW.