Millions of Americans live with dementia. Whether you are starting to experience changes, have received a diagnosis, or are concerned about dementia in the future, one of the most important things you can do to prepare — for yourself and your loved ones — is reflect on what is most important to you, document your wishes, and develop a plan. You can have a say in your future care and your end-of-life experience.

Dementia is a general term for a range of neurological conditions that progressively impair cognitive function. Alzheimer’s disease is the most common cause of dementia, accounting for around 60% to 80% of cases. In the early stages of dementia, symptoms may be noticeable but typically do not significantly interfere with daily life.

As the condition progresses, people often experience memory loss, difficulty with decision making and communicating, and challenges in performing daily tasks. More support becomes necessary at this time, making early planning essential.

Here are three things you can do now to prepare for the future:

1. Reflect on your healthcare wishes and end-of-life experience.

Every end-of-life plan should start with thinking about your values, wishes, and what is most important to you. Reflect in detail about how you want to experience the end of your life and what type of care you do and don’t want.

How do you feel about the use of life-sustaining treatments, such as artificial nutrition or breathing assistance? Do you want to live as long as possible and receive aggressive medical care if needed? Would you prefer to still be treated, but not aggressively, or allow for a natural death by focusing on comfort care?

Your answers to these questions will likely vary depending on the situation. For instance, what type of care would you want to receive if you are no longer able to recognize your loved ones, if you require 24-hour assistance, or if you are no longer able to walk or move safely on your own? You may want different care and medical interventions in each of these scenarios.

Additionally, if your healthcare provider determines you have six months or less to live, consider whether you would want to be enrolled in hospice care.

Compassion & Choices’ Dementia Values and Priorities Tool is an interactive resource that walks you through these questions and different situations, and documents your wishes regarding the care you want. It is available in English, Spanish, and simplified and traditional Chinese. Our Values Worksheet is another resource to help assess what matters most to you.

2. Make your healthcare wishes known.

The next step is to communicate your healthcare wishes clearly to the people in your life, your medical team, and anyone else who you want to be involved in your care — such as a spiritual leader. Discuss your preferences for medical treatment, daily care, and who you trust to participate in your care and make decisions on your behalf in case you are unable to represent yourself.

Having these conversations in advance can ensure that decisions made later on as your condition progresses align as closely as possible with your priorities, values, and desires. Your wishes also may change over time, so it’s important to have these conversations on an ongoing basis.

It’s also vital to formally document your wishes in an advance directive: a legal document that allows you to express the type of care you want, how treatment decisions should be made, and by whom. A dementia directive is an addendum to your advance directive that addresses the unique issues that can arise with the progression of dementia. You can create this addendum using the Dementia Values and Priorities Tool.

3. Decide who will advocate for you.

As dementia advances, the ability to make complex decisions diminishes. It’s essential to designate a healthcare proxy or durable power of attorney to manage your healthcare decisions and your finances in case you are unable to represent yourself. These should be people who you trust to honor, uphold, and defend your values and priorities, as they will play a crucial role in maintaining your well-being later on.

• People with dementia often experience difficulty managing finances. In fact, financial management challenges can be one of the earliest signs of dementia. Appointing someone to assist in this area can be critical for safeguarding your financial health and stability.
• A durable power of attorney for healthcare is also known as a healthcare proxy or representative. This person must be able to clearly and confidently advocate for you and communicate your wishes to your care team, even in stressful or intense moments.

You can select family members, friends, or any trusted adult to serve in these roles. Once you have people in mind, take time to explain what you expect from them to ensure that they are comfortable serving in these roles. If they agree, keep them updated as your dementia progresses and if your needs or desires change.

By planning ahead, documenting your end-of-life wishes, and discussing them with your care team, you can improve the chances that your values and desires will be respected later on. It also takes the guesswork out of what you do and don’t want, serving as a gift to those who care for you.

This blog post draws from Compassion & Choices’ webinar “As the End Nears: Dying With Dementia,” featuring geriatrician and palliative care physician Dr. Natalie Young and Compassion & Choices Medical Director Dr. Susan Wilhoit. You can find additional information and resources related to dementia here.

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