Future planning and dementia

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.
Nakanishi, M., Martins Pereira, S., Van den Block, L., Parker, D., Harrison-Dening, K., Di Giulio, P., In der Schmitten, J., Larkin, P. J., Mimica, N., Sudore, R. L., Holmerová, I., Korfage, I. J., van der Steen, J. T., & European Association for Palliative Care (2024). Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care. The lancet. Healthy longevity, 5(5), e370–e378.

Capacity to make one's own decisions is fundamental to the autonomy of the individual. Capacity is a functional assessment made by a clinician to determine if a patient is capable of making a specific decision. Competency is a global assessment and legal determination made by a judge in court. Capacity evaluation for a patient with dementia is used to determine whether the patient is capable of giving informed consent, participate in research, manage their finances, live independently, make a will, and have ability to drive. Patients with dementia cannot be assumed to have impaired capacity. Even a patient with moderate or severe dementia, with obviously impaired capacity may still be able to indicate a choice and show some understanding. Four key components of decision-making in a capacity evaluation include understanding, communicating a choice, appreciation, and reasoning.
Hegde, S., & Ellajosyula, R. (2016). Capacity issues and decision-making in dementia. Annals of Indian Academy of Neurology, 19(Suppl 1), S34–S39.

Many Australians incorrectly believe that a person with dementia cannot make any decisions for themselves. Supported decision-making can be all that’s needed. This article was written by Dr Rose Capp, Dementia Australia Policy Advisor with Ann Pietsch, chair of the Dementia Australia Advisory Committee. Ann is a retired health professional who lives with Lewy body dementia. Ann describes how a supported decision-making approach enables her active involvement in planning and decision-making in all aspects of her life.

All adults have the right to make their own decisions. If an older person can manage some, but not all, of the steps in the decision-making process, providing the right support is vital for their autonomy, dignity and wellbeing.

Forward with Dementia provides a range of information and resources about planning and making decisions. Forward with Dementia challenges negative stereotypes about dementia. It provides guidance after a diagnosis of dementia, and enables people with dementia and their carers to lead fulfilling lives with dementia.

Advance care planning involves planning for your future health care. It enables you to make some decisions now about the health care you would or would not like to receive if you were to become seriously ill and unable to communicate your preferences or make treatment decisions.

Access advance care planning information in languages including, Arabic, Cantonese, Chinese (Simplified), Chinese (Traditional), Croatian, Greek
Hindi, Italian, Japanese, Macedonian, Mandarin, Polish, Portuguese, Russian, Serbian, Spanish, Tagalog, Turkish and Vietnamese.

Compass has been created by Elder Abuse Action Australia (EAAA), with funding from the Australian Government Attorney-General’s Department. Compass provides practical information on a range of future planning topics, such as wills, power of attorney, advance care directives and more.

The Dementia Law Network aims to:
Advance knowledge on issues at the intersection of law and dementia.
Bring together researchers, clinicians, legal practitioners, people living with dementia, their families and the broader community.
Develop evidence-informed resources and strategies to improve practices and policy.
Build national and international connections.

Advance care planning, powers of attorney, supported decision-making, substitute decision-making are important for everyone as they age but of increased importance and complexity when a diagnosis of dementia, or planning for the risk of dementia and cognitive decline, is involved. This research makes a number of recommendations and provides tools and informative resources for the community, the aged care sector, financial institutions and government.