A simple question on the surface, but there is no simple answer. This is a question I was asked this past week by a member of my early Alzheimer’s support group. We had just finished an appointment with the neurologist and made a pact to stop driving due to increased episodes of disorientation. My initial response was to tell him it was lunchtime, and we could grab a bite to eat, but I knew that was not what he was really asking me. He was always a businessman and now he is searching for a purpose in a world filled with confusion and lost abilities. Around every corner, this disease was taking more and more away from him, first his golf game, then money management, then driving and now basic things like using the stove. He is intelligent and knows exactly what he wants to say, he just cannot always retrieve the information or find the right words.
Can you imagine the frustration? If you are not currently touched by Alzheimer’s disease in some way, statistically speaking, you will be at some point in the future. Our society as a whole, and specifically our health care systems, will be faced with the enormous challenge of caring for and funding care for those diagnosed with some form of dementia. The Alzheimer’s Association recently released the 2014 Facts and Figures Report, and it is worth checking out. According to the report, http://www.alz.org/downloads/facts_figures_2014.pdf, an estimated 5.2 million Americans of all ages have Alzheimer’s disease in 2014. This includes an estimated 5 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.
• One in nine people age 65 and older (11 percent) has Alzheimer’s disease.
• About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.
• By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million— a 40 percent increase from the 5 million age 65and older currently affected.
• By 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple, from 5 million to a projected 13.8 million.
To date, we have no cure. It is the only top 10 cause of death without a way to prevent, cure or even slow its progression. So someday, you may be the one asking, “What am I supposed to do now?” There are an array of topics for discussion surrounding Alzheimer’s and other dementias. For purposes of this column, we will stick to practical answers to the question at hand.
The first step after getting a diagnosis is gathering information. Understanding what this disease is and how to prepare to live life with cognitive impairment. You and your family/caregiver need education, resources and support as you travel down this road. Alzheimer’s North Carolina and the Alzheimer’s Association both offer information, support and ideas for those living day-to-day with this disease. One of my favorite books to use in our support group is “Living Your Best with Early-Stage Alzheimer’s: An Essential Guide” by Lisa Snyder. The chapters are short, easy to read (and re-read) and offer practical tips for understanding and living each day to its fullest. Having a diagnosis of Alzheimer’s disease does not mean life is over, it means that you have to learn to compensate for cognitive changes and modify activities as the disease progresses. That evening I decided to write to him, so he would have a reminder of all we discussed and also to make a concrete list to answer his question. He is searching for purpose, pacing the house each day, because the things that once occupied his time are no longer a part of his day-to-day life. Here is a portion of what I told him:
Dear Mr. D,
Today, we went to visit your doctor to address recent memory problems, sleeping problems and driving. In the room, we discussed that I would email you a recap of our conversation to serve as a reminder.
Issue 1: You are not sleeping well at night.
Recommendation: You are currently taking Mirtazapine – this is a small yellow pill that is in your “pm” pillbox. It is to help boost your mood and also to help with sleep. You take this every night before bed. Exercise during the day will also help with sleep – you are doing this.
Issue 2: You have short-term memory loss due to Alzheimer’s disease
Recommendations: Write everything thing down – use your desk calendar and large desk clock to orient yourself each day. You have the information in your brain, but it gets lost and confused and makes it difficult for you to find words and thoughts. Keep an index card with you that states your name, address, the year, current living situation, what time a caregiver comes each day to assist you.
Issue 3: You are getting disoriented in the early morning and driving around looking for familiar people.
Recommendations: DO NOT DRIVE at this time. The risk to you and to others is too great. You never know when confusion will happen, and it impairs your judgment, reasoning and reaction times, thus it is not recommended that you drive. We will make sure you have resources for transportation when needed. Driving is so ingrained in what you do every day that it may be hard to remember that you are not supposed to be driving, so have the caregiver keep the key or put the key up where you will not see it and be tempted. The caregivers can drive you places in your car.
We all realize it is a big inconvenience, but admire you greatly for having the courage to agree not to drive, of your own accord. Giving this up with dignity is the better option.
Good things from our meeting:
1. You are doing great with exercise and balance
2. You are doing great with nutrition
3. You are taking medications correctly
4. You have caregivers in place for extra support
5. You are getting out of the house and trying to stay active (a work in progress).
You have a great deal of love and support – just because your memory is failing, does not mean that you are! Keep going one day at a time. We are here to help.
Other ways to fill your day: Pick up the yard, plant a small garden, go to the fitness center, visit the community college gardens, have a picnic, volunteer with your caregiver, visit the senior center, make a collage of magazine pictures you like, keep a puzzle out to work on, fold laundry, pick out food from the local farmers market, clean out clothes you no longer wear, listen to your favorite music, hit golf balls.
Amy