Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning.

Both specifically address the needs of people with dementia and their families; and best approaches for decision-making when someone has reduced capacity. The case conferencing website provides tools and tips for involving families and GPs in making care decisions where the person’s dementia is too advanced for him/her to be directly involved. The report focuses more on earlier stage disease and gives advice on ways to help people with dementia be as involved as possible in making decisions about the future.

Q: What is family case conferencing all about?

A: Case conferencing aims to understand the areas of care that are important for the person with dementia to ensure care is person-centred; and also to agree on goals of care, and then develop shared approaches to meet these –  by people who know the person with dementia well and have authority to make decisions. It is important that both families and health professionals are helped to understand the life-limiting nature of dementia as well as given information and support to make care decisions in keeping with what the person would have wanted and clinical guidelines based on research.

Q: What tools does the website offer to help with this?

A: The website offers simple templates and tools to help with identifying when a case conference might be helpful, who to invite, how to make it easy for them to attend, what should be discussed, and how to follow up with an agreed care plan. We’ve illustrated with case examples, and there are short videos that can be used for in-service training.

Q: And what are the key messages about advance care planning in dementia?

A: The main message is to start early so as to give the person with dementia the maximum opportunity to make their wishes known and understood by the people they choose to make decisions after the time they become less able to do so. Advance care planning is an iterative process in which people are helped to think about and communicate their values in ways that will inform future decisions in a wide range of situations, including those that could not have been foreseen. Having said that, certain issues come up a lot as dementia advances and need special consideration, notably where the person wants to be cared for and ultimately to die, taking into account what the family is realistically able to do.

The case conferencing  website is available through CareSearch (www.caresearch.com.au/DementiaCaseConferencing) and the advance care planning report via the Cognitive Decline Partnership Centre (http://sydney.edu.au/medicine/cdpc/resources/advance-planning.php).

The resources were launched at a forum  held on 23rd May at the University of Technology Sydney (UTS), called ‘What is needed to improve care planning for people living with dementia?’

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