Section 4

Providing a structure for dementia care decisions

Why support decision making for those living with dementia?

As a person lives with dementia over time, they may have a harder time grasping their health issues and the care they need. The potential risks and benefits of their choices and actions may also become hard to grasp. This decline in breaking down information can make things unsafe without support for daily decisions. These can be in areas like driving, eating, taking medicines or managing their money.

Caregivers, be it a single person or a group, often support decision making for their loved ones. Caregivers are provided little guidance on how to make daily care and complex decisions in the best interest of the individual living with dementia.

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Dementia care decisions

Making decisions about dementia care are not easy. Having a structured approach in making a decision that is right for everyone involved helps. This section goes through two support tools for making decisions for dementia, whether as simple as what are the best activities to keep a loved one busy to more complex decisions like the best option for feeding a loved one who is choking with eating.

This section includes:

The five-step decision tree example on pages 76–77 is intended to help support many of the complex care issues (medical therapies, Advance Care wishes) that arise during the dementia journey.
The daily care decision worksheets can help with daily care decisions. Starting on pages 52–55, this section is intended to help support safe daily care choices that are focused on values, changes noted in your loved one and support options for changes. These worksheets are time-stamped because the care needs and values may change over time. The time stamps allow you to reflect on where you are currently and where you have been along the journey with dementia. The choices focused in these worksheets will always help you to recognize:
- What has changed in your loved one?
- What options are you considering to help yourself and your loved one?
- Who is available in your network to support daily care decisions?
- What are important values of your loved one or care team that should be considered?

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Examples of care decisions these tools could support:

Housing options (relocate or increase in home care)
Transportation safety (to drive or not)
Medical therapies (medicines, feeding tube, surgical interventions)
Advance Care Planning wishes (breathing tubes, hospital transfers)