Living with Mild Cognitive Impairment (MCI)

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Tue, Jul 17, 2018 11:01am

Planning for the Future: Advance Directives

By Dr. Anne Shandera-Ochsner, HABIT MN Director, @dranneshanderaochsner

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A diagnosis of mild cognitive impairment (MCI) comes with a lot of uncertainty. Shortly after your discussion with your doctor, you may have wondered what your diagnosis means for the future. Many people worry about being a "burden" on their loved ones in the future, especially if MCI turns into dementia.

While we cannot predict the future with certainty, we do know that having MCI increases the likelihood of dementia, which means that you may eventually need help making major decisions due to the thinking problems that come along with your condition.

This is tough to think about, and many people push this topic to the side, saving it for later. The problem is, families often find that "later" gets pushed out farther and farther away, right up until there is a crisis. By that point, the initial memory or other thinking problems may be much worse, and the person unable to fully participate in the decision making process. This is a stressful situation for other family members, who are left with the anxiety of not knowing exactly what their loved one would have wanted when faced with the issue at hand. No one wants to put their family in this position. Fortunately, there is a way to prevent this.

Advance Directives

An advance directive is a legal document that can be “activated” or put into effect in the event that you are unable to make your own healthcare decisions. A physician or psychologist must make this determination based on a thorough examination of you at the time your capacity (ability) to make decisions is in question. The document specifies:

  • Who you want to make decisions on your behalf. This is sometimes called a “surrogate decision maker” or “healthcare surrogate.” Usually you can designate a first choice and a second or even third choice.
  • Your wishes about the care you receive. For example, whether you want life support. Often, you can specify the situations in which you want certain interventions depending on your doctor’s opinion of whether you are expected to recover.
  • Essentially, this is your written “voice” to be used if there is a time when you cannot state your wishes or make your own decisions. This is a gift to your family in that they will not be put in the stressful situation of trying to guess what you would or would not want.

How to Get Started

You can fill out an advance directive well in advance of needing one. It’s a good idea for every adult to fill one out, regardless of whether you think you will need it in the future. Because the legal requirements for the document can vary from state to state, it’s important to use your local resources to help you get started.

  • Talk to your primary care provider/family doctor. He or she will likely be able to provide you with the form used in your area, and can talk with you about your wishes. At Mayo Clinic, your physician can help you meet with a social worker who can walk you through filling out the form and even witness your signature.
  • Or, you can contact your area agency on aging. Visit https://eldercare.acl.gov/Public/Index.aspx to find the agency in your zip code.

Once you’ve completed your advance directive form and had your signature witnessed, make time to do the following:

  • Give your healthcare facility or providers a copy of the completed form. It’s good for them to have a copy scanned into your medical record in the event it is needed.
  • Tell your family where the original document is filed at home.
  • Sit down and have a discussion with the person or people you have listed as your surrogate decision makers. Talk about your preferences for care in the future as outlined in your advance directives. It can help them to understand why you do or don’t want certain medical interventions.

Have you completed your advance directives yet? Any tips for others who are considering this?

 

 

 

Thank you for this article. I have MCI with severe WMD so I could get worse quickly. I'm doing really well right now and even taking steps to delay onset of dementia such as fat free vegan diet, music and Spanish. I do want to get this done and have an appointment with an attorney estate planner next month. Is that not the correct place to start? It's all confusing and nobody seems to know much about the order of things. I have been diagnosed there in the Mayo Clinic.

Thank you!

Nancy

@nancywootten

Thank you for this article. I have MCI with severe WMD so I could get worse quickly. I'm doing really well right now and even taking steps to delay onset of dementia such as fat free vegan diet, music and Spanish. I do want to get this done and have an appointment with an attorney estate planner next month. Is that not the correct place to start? It's all confusing and nobody seems to know much about the order of things. I have been diagnosed there in the Mayo Clinic.

Thank you!

Nancy

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Hi Nancy, you certainly can start with an attorney. They should be knowledgeable about the requirements for such a document in your area. The other options listed above are alternatives that would not come with a legal fee. Nice to hear you are being proactive in getting this taken care of!

@nancywootten

Thank you for this article. I have MCI with severe WMD so I could get worse quickly. I'm doing really well right now and even taking steps to delay onset of dementia such as fat free vegan diet, music and Spanish. I do want to get this done and have an appointment with an attorney estate planner next month. Is that not the correct place to start? It's all confusing and nobody seems to know much about the order of things. I have been diagnosed there in the Mayo Clinic.

Thank you!

Nancy

Jump to this post

I called my primary care doctor today and they do have a packet there with all the information in it that I will need to get started. To others: They said they did not and I should look it up on the computer. In an effort to be a good advocate for myself I asked her to ask her office manager if they had it. After checking she said they have a notebook that I can come get today. YAY!

Thank you Dr Shandera-Ochsner! We all need the guidance you offer.

Nancy

@nancywootten

Thank you for this article. I have MCI with severe WMD so I could get worse quickly. I'm doing really well right now and even taking steps to delay onset of dementia such as fat free vegan diet, music and Spanish. I do want to get this done and have an appointment with an attorney estate planner next month. Is that not the correct place to start? It's all confusing and nobody seems to know much about the order of things. I have been diagnosed there in the Mayo Clinic.

Thank you!

Nancy

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Good for you for being persistent!

This is an excellent article on the subject. Having had my Mother live with us the last four years of her life in OK we had just gone through the "end of life" experience. All our advance directives had been completed in OK. When we relocated here to Mesa, AZ we did the new paper work required in a new state. That was just around the time of my husbands diagnosis of MCI. I'm sure everything would be the same; except for thinking about his name being my first choice on the documents. The children listed after him would step up and make decisions if he is unable in the future. There may be a question someday and changes make in the future if necessary. How do others handle this?

@bonniep

This is an excellent article on the subject. Having had my Mother live with us the last four years of her life in OK we had just gone through the "end of life" experience. All our advance directives had been completed in OK. When we relocated here to Mesa, AZ we did the new paper work required in a new state. That was just around the time of my husbands diagnosis of MCI. I'm sure everything would be the same; except for thinking about his name being my first choice on the documents. The children listed after him would step up and make decisions if he is unable in the future. There may be a question someday and changes make in the future if necessary. How do others handle this?

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@bonniep, this is such a tough decision, and one I'm sure many others with a spouse diagnosed with MCI face. Often it does make sense to list someone other than your spouse as the surrogate decision-maker, given the uncertainty about what your spouse's cognitive capacity may be in the future. This can be a good topic to discuss as part of the larger "planning for the future" discussions you and your spouse have.

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