When the Doctor says “Dementia”

There are few things scarier than hearing that your spouse, parent, or other close loved one has been diagnosed with dementia. It’s normal to feel sad, angry, and afraid, and it’s typical for the person diagnosed to be in denial. You may need time to grieve, and you should absolutely let your loved one express their feelings, but the sooner you empower yourself and your loved one by creating a dementia action plan, the better you’ll be able to minimize the impact of the disease for your whole family, and the better you’ll be able to maximize your loved one’s quality of life.

So, where do you start? To develop the best plan for ensuring your loved one’s optimal health and safety, use the following tips when creating a dementia action plan.

1. Get information about your loved one’s condition.

Rely on your loved one’s treating providers for a specific diagnosis and to prescribe the latest and most appropriate treatment for your loved one’s condition. But you know your loved one best and you can assist the provider with identifying the most appropriate course of action, particularly when it comes to identifying which lifestyle modifications are needed and will be tolerated by your loved one. The single best resource for getting information about the different types of dementia and their treatment options is the Alzheimer’s Association website, which can be found at https://www.alz.org/. Take notes as you go through the available information and make sure to bring any questions you have to your loved one’s provider appointments.

2. Help your loved one follow the treatment plan.

Once you’re armed with the information about your loved one’s disease and a treatment plan is developed with your loved one’s providers, you will need to remind your loved one about the importance of following the plan. Again, many people diagnosed with dementia are in denial about the illness, and they sometimes forget the details of the plan or their purpose. Be prepared to gently remind your loved one of the reasons for each intervention and assist them with sticking to the plan.

3. Get support and take care of yourself.

Coping with a loved one’s dementia can be excruciatingly hard, but you’re not alone. Some of the most valuable benefits the Alzheimer’s Association provides are its online and in-person support groups, which provide encouragement, support, education, coping strategies, and community, and they should be a central part of your dementia action plan. Many hospital systems and other healthcare providers also host support groups for families living with a dementia diagnosis and the Alzheimer’s Association provides information about those on their website as well. One of the most important parts of your dementia action plan is to take care of yourself physically, emotionally, and spiritually. Ask for help and seek support wherever you can find it. You are no good to your loved one if you neglect yourself.

4. Encourage your loved one’s independence but ensure their safety.

The most tragic consequence of a dementia diagnosis is the loss of a person’s sense of dignity and independence, so it’s important that they be encouraged to make as many decisions as safely possible for themselves and that they not be unnecessarily infantilized. But safety should always be a concern and should be continuously assessed. Discuss with your family, your loved one’s doctor, and the other members of your loved one’s care team whether your loved one should continue to drive. Continually assess the safety of your loved one being left alone or having access to medications, guns, and other potential hazards. Strongly consider employing a geriatric care manager to assess the safety of your loved one’s home and living environment as their condition progresses.

5. Plan for the future.

Contact an elder law attorney as soon as possible to make sure all your loved one’s legal and financial affairs are in order.

If your loved one doesn’t already have a financial power of attorney, advance directive, and/or will, an elder law attorney can help you prepare these documents and assist in determining whether your loved one still has the capacity to execute them. A dementia diagnosis alone does not make a person incapacitated for purposes of preparing and executing these documents. Eventually, dementia likely will make them unable to do these things. An elder law attorney can ensure your loved one is protected, that they don’t fall victim to fraud or undue influence, and that their wishes are honored.

A financial power of attorney, also known as a durable power of attorney, is a document that empowers your loved one to appoint an agent to handle their financial affairs when they become unable. This document is intended to prevent the need for a court-ordered conservatorship, which is expensive, time-consuming, and often contentious.

An advance medical directive allows your loved one to appoint an agent to make medical decisions for them and empowers them to make many medical decisions, in advance, for themselves before they lose the capacity to make them. This document is intended to prevent the need for a court-ordered guardianship, which is also expensive, time-consuming, and often contentious.

And of course, a will permits your loved one to decide how their property should be distributed upon their death.

An elder law attorney can also help you plan for your loved one’s long-term care. Elder law attorneys work with care managers, financial planners, home care providers, long-term care providers, and other professionals to develop strategies for ensuring your loved one receives the best, most appropriate care in the future. They can also help develop strategies to pay for that care. For example, an elder law attorney can advise you regarding the use of trusts, Medicaid planning, and they can assist with long-term care insurance and disability claims.

6. Remember to look for opportunities to enjoy life.

Learning to live with dementia can be difficult and scary, but it’s important that you don’t forget to make the most of the time and memories you have with your loved one. Look for opportunities to laugh. Encourage your loved one to remain engaged in activities they enjoy and can still do. Research shows that engaging the mind and remaining active slows the progression of dementia, and it reminds them that there is still so much life to look forward to.

These are just some of the basic components of your dementia action plan. The Alzheimer’s Association provides a great resource for helping you and your team develop a comprehensive, workable plan at https://www.alzheimersnavigator.org/. A dementia action plan is a start, and as you work through some of these tough issues, remember to be flexible. With so many unknowns in the beginning, be ready to adjust the plan together as your loved one’s condition changes and develops. Together, you and your team can create some light in the darkness and empower your loved one to live the rest of their life to the fullest.