When you have dementia, you’ll lose the capacity to make decisions and the ability to communicate. You won’t be able to make financial, lifestyle, and health-related decisions later on or discuss with your family about what you want when it comes to aged care. This is why it’s important to have an advance care plan. It’ll let your family know what you want and make it easier for them to communicate your wishes to health professionals who don’t know you.
Research shows that 49% of people don’t have an advance care plan in place. For those who do, they’re more likely to receive end of life care in accordance with their wishes. So whether it’s care for yourself, a parent, partner or loved one with dementia, it’s beneficial to start planning early.
When should you start planning?
You should start planning as soon as possible after you’ve been diagnosed with dementia. Because if your condition gets worse and you’re no longer able to make decisions or communicate, who will decide for you if you can’t decide for yourself? Who will make decisions regarding your finances, lifestyle, and health?
While you can still make decisions about your end of life care and communicate your thoughts and feelings on the matter, start planning!
Benefits of advance care planning
Having an advance care plan that outlines your beliefs, values, and treatment preferences will benefit not only you, but your family and healthcare providers as well.
- It allows your family to reflect on conversations or comments you’ve made about your values and attitudes towards your care near the end of your life.
- It also allows your healthcare providers to make decisions about your care in line with your values and preferences.
- You can nominate someone as a substitute decision-maker who can act on your behalf if questions about your care are raised, eg life-prolonging treatments.
- It’ll help your family prepare for possible decisions they may need to make about your care, instead of having to make decisions during a time of crisis without preparation.
- It gives your family the opportunity to consider issues and make statements that can be used to guide treatment decisions when they need to be made.
How to create an advance care plan
First, talk to your family and healthcare providers (your GP, aged care facility staff, or a community agency providing home care) about advance care planning. Then write down your decisions on a document. The Start2Talk website has an advance care planning worksheet you can print out or complete and save online. If you live in NSW, you can use the worksheet in the book A Plan of Care.
Here are some questions to ask yourself when preparing your advance care plan:
- What are your beliefs, values, and treatment preferences?
- How and who will manage your finances and lifestyle?
- Do you prefer home care or residential aged care?
- What’ll happen to your home if you choose residential aged care?
- Can you afford the cost of home care or the cost of a nursing home?
- How will you pay for accommodation if you choose to stay in a nursing home?
- Who will you appoint as your substitute decision-maker?
Make sure to give a copy of the final and completed version of the plan to your family members and healthcare providers.
You should review and update your advance care plan at least once a year, especially if you’ve made changes to your treatment and care options. An up-to-date plan will also make it easier for healthcare providers to assess its validity.
Additional resources on advance care planning
If you want to find out more about advance care planning, here are some useful resources from around the web.
Discusses what is meant by advance care planning, looks at advance care planning for
people with dementia, and more.
Covers the benefits of advance care planning, has information for carers of people with
dementia, and so on.
Covers one’s capacity to complete an advance care plan, when you should complete an
advance care plan, who can assist in completing an advance care plan, etc.
Looks at euthanasia and the arguments for and against it, which includes issues relevant to
people with dementia.
The website has other advance care planning worksheets. It also has information relevant to
people who want to prepare for a time when they can’t make their own decisions due to
dementia, people who have dementia, and family carers of a person with dementia.
The website has plenty of information about making an advance care plan, which includes
Start planning now
Having an advance care plan in place means your wishes will be honoured should the time come when you’re unable to make your own decisions. Your family and other people involved with your care will also know what to do when caring for you if you’ve discussed it with them and outlined it in your plan.
If you need some help with the planning process, contact Pinn Deavin today. We can help you plan for a level of age care that’s comfortable, dignified, and affordable.