Living with dementia is especially difficult because people often lose the ability to communicate their thoughts, emotions, and needs to the people they love. This is tremendously frustrating for the person with dementia, but it can be even harder on their loved ones, especially when they are faced with making difficult decisions concerning their deteriorating health.
As the disease progresses, people with dementia tend to lose the following abilities:
- Communicating basic wants and needs
- Making decisions about their own care, finances, and everyday decisions
- Recognizing family and friends
- Taking care of themselves: eating, walking, getting out of bed, using the bathroom, grooming, and dressing
Many people do not recognize that advanced dementia is ultimately fatal. Depending on the type of dementia, the disease can progress slowly or very quickly. Therefore, it’s essential to document and discuss end-of-life wishes earlier in the disease process — when decisions can be made with a sound mind.
4 Critical End-of-Life Documents
At a minimum, we strongly encourage you to help your loved one create the following four documents to preserve their healthcare and financial decisions. Beyond documenting their wishes in the forms below, discuss each decision to ensure you understand the choices that have been made.
Keep everyone in the loop (close family members, medical team) as decisions are made to reduce the likelihood of confusion or conflict down the road. To make communication easier, you can share access to any of these documents using a free Cake account.
1. Health Care Proxy
A health care proxy is a legal document that lets you choose someone you trust (e.g. spouse, family member, friend) to be your health care agent. The agent steps in to make medical decisions on your behalf if you can no longer communicate. Everyone 18 and older needs one, and it is an easy document to create.
Why it’s so important: People with dementia often lose the ability to recognize their family and friends. They may also lose consciousness or the ability to communicate wishes for medical care as the disease progresses. A Health Care Proxy form will ensure their person of choice steps in to make medical decisions when the time is right. This can also prevent family arguments over who should be making decisions.
2. Living will
A living will, sometimes called an advance directive, outlines your preferences for care in case you cannot communicate them yourself. Some people decide they want to live as long as possible, no matter the tradeoffs to quality of life. Others feel that comfort and quality of time left are more important.
Living wills are documents that express these preferences by outlining the types of life-prolonging treatments you would or would NOT want to receive near the end-of-life if you couldn’t communicate — things like CPR, breathing tubes, artificial nutrition/hydration, comfort care, etc.
Why it’s so important: It is exceptionally tough to make decisions about continuing or ending life-sustaining medical care on someone else’s behalf when you don’t know their wishes. Beyond ensuring someone with dementia receives the end-of-life care they want, the decisions documented in a living will can reduce feelings of guilt and confusion for the designated health care agent and anyone else involved in signing off on hard decisions. Living wills can also reduce the likelihood of legal battles like the infamous Terri Schiavo case, where family disagreed over Terri’s verbally-expressed (but undocumented) end-of-life care wishes for years before they were honored.
3. Power of Attorney
A Power of Attorney (PoA) allows you to choose someone to make financial decisions on your behalf. This can go into effect immediately, or at a future time when mental capacity degrades. This power does not extend to financial affairs after death. This does not have to be the same person as your health care agent. Anyone 18+ with significant assets should consider putting this document in place.
Why it’s so important: It is common for people with dementia to eventually lose their capacity to manage their own finances. Setting up a Power of Attorney while they can make a sound decision about who should assume this role is ideal. This will ensure that someone else can eventually step in and take control of financial matters.
A will details your wishes for the distribution of property and assets after you die, and instructions for care of any minor children. Anyone 18+ who has property, assets, and/or minor children should complete a will to ensure your wishes are honored.
Why it’s so important: Even if the person with dementia doesn’t own property or have large sums of money, a will reduces the likelihood of family arguments that can arise when bequests of assets, property and sentimental items go undocumented. Furthermore, a will can shorten the time and expenses associated with probate court for the family after death.
Capturing other helpful end-of-life information
In addition to these four documents, Cake also helps you capture information that will be helpful in tying up loose ends someday. The following info will be tremendously helpful to anyone handling their estate and carrying out last wishes:
- Document body and funeral preferences (cremation vs. burial, etc)
- Make an account & asset inventory (where to locate their bank accounts, life insurance, etc)
- Make a pet care plan
Breaking the ice on end-of-life conversations
It’s natural to feel nervous bringing these topics up with your loved one. No doubt, it’s hard to start these conversations – but it will be worth the temporary discomfort. This is one of the most caring acts you can do to ensure their end-of-life experience reflects their wishes and values.
If you need help starting the planning conversation, here are a couple of approaches that may help:
- Call upon your loved one's medical team
Plan some time to speak with their doctor or specialist about your initial concerns and questions about the end-of-life scenarios and decisions you may be faced with someday. Their doctor may be able to coordinate some time with a social worker that specializes in these hard conversations.
- Use Cake side-by-side to start planning
We aim to make end-of-life decisions easier by breaking things down into simple yes and no questions. These questions can be great conversation starters, too. Talk about them together, expressing your own preferences to grease the wheels of the conversation. You may even want to use Cake to plan for yourself first, so you know what to expect from the planning process.
If you don’t think they are ready to dive headfirst into the decisions related to the documents listed above, you can start with other Cake Checklist topics such as "How to Remember Me", "Digital Legacy Plan", or "Bucket List.” These topics are lighter in tone and thought-provoking – a good segue into the healthcare and financial topics.
Caring for a loved with one with dementia can be challenging, but we hope that Cake’s free end-of-life planning checklist can help your family through the days ahead. Documenting and honoring your loved one’s end-of-life wishes is one of the greatest gifts you can give to them. Please reach out to our Support team if you need help getting started: firstname.lastname@example.org