Life and Memory Center

The latest article from the New York Times series, “The Vanishing Mind,” focuses on treatment for advanced Alzheimer’s disease. The article points to several programming methods that may be useful to many caregiver’s as well as facilities that wish to develop personalized dementia care programs that engage rather than medicate or force clients into group activities in which they have no interest or skills. They cite the Beatitudes Campus in Phoenix, AZ. Beatitudes is a continuing care retirement community focused dementia care on making Alzheimer’s patients clients receiving personalized care. They build programming on biography and personal history.

Beatitudes builds on the obvious rather than trying to medicate problems as they arise. They have implemented techniques that we have known for years into their programming rather than forcing power struggles with clients and have had many successes with residents who were kicked out of other facilities because they were “difficult cases.” I list a few examples to help us all rethink caregiving.

We have known for years that bright light therapy improves mood, reduces “sun downing,” and resets circadian rhythms. Many dementia facilities are dark and restrict residents exposure to natural direct light. Putting brighter lights in fixtures and getting clients out in the sun decreases depression and helps to preserve functional abilities longer.

The visual cliff is an apparent but not real drop from one surface to another that is used to test for depth perception in infants (and often dementia unfolds as reversed development). This illusion returns in many with dementia and can be used to reduce wandering. It is simple to use. Place a rectangular black carpet or tiles in front of exits.

Incontinence is a major problem for many and is often the trigger for placement in a facility or becomes a problem after placement because some staff find it easier to change a diaper than to be proactive. The solution is simple. Schedule toilet breaks during the day (say every hour) to keep bowel and bladder empty. These breaks can be part of the programming and treated as a routine activity. It keeps clients out of diapers longer and preserves dignity.

Group events are convenient and efficient for facilities and are a stable part of activity programming. But some clients have always been loners and would never enjoy group activities. Others cannot attend to the distraction of others in group activities or can no longer understand the rules. They need one-on-one programming and activities. Why not have clients participate in normal activities they used to do like help make their bed? They could be helpers to staff rather than passive observers or nuisances.

I hope this article provides some useful ideas about how to treat Alzheimer’s in later stages. There is so much we can do to improve the quality of life for our clients. As Montessori Programming for dementia care proves, an educational approach to caring for the cognitively impaired works. Maybe teachers should build the care units rather than health professionals.

It’s interesting how we ignore the obvious. The latest article from the New York Times series, “The Vanishing Mind,” focuses on treatment for advanced Alzheimer’s disease. The title of the series has it wrong. The mind does not vanish. Rather it becomes limited and inflexible. As Alzheimer’s progresses, the client (yes, even those with severe cognitive decline are our clients and deserve to be treated as such) becomes unable to adapt to the environment. The environment must be adapted to the client – personalized care. We don’t expect more of children than they are capable and mold their environment to meet their competence but we don’t give those with Alzheimer’s the same courtesy. We expect them to adapt to our convenience and needs. I have often said that if I have to go to a facility, don’t make me play bingo. I don’t like bingo. Instead, give me a cat and open access to pumpkin pie and strawberry short cake.

I was recently talking to a spouse, whose partner is in a facility. She pointed out that he goes to bed very late and rises in the afternoon. Rather than listening, the first strategy was to try to fit him to the program they had. They tried waking him to get to breakfast. When that failed, they tried medications to make him sleep through the night in the hope that he would “adjust” to their schedule. Unfortunately, this started a power struggle and everyone lost. He became more confused and agitated on several different medications.

A better approach would be to discuss with his wife his patterns. An individualized program would have allowed him to sleep on his schedule. If he rises at noon, that works for him. The facility has staff 24/7 and can accommodate the client. There is no logical reason for him to eat breakfast at 8AM or to be dressed and ready to go to an activity by 10. The treatment for many “difficult” clients is obvious, but inconvenient for rigidly-planned scheduling. Creative therapy is based on the retained patterns, behaviors, skills, and interests of the client. Take the client to what he or she likes to do.

A number of years ago, I had an interesting client who had this concept mastered by just going with the flow. By usual standards his wife could no longer golf despite the fact that she loved to golf. When they golfed, he placed the ball on the tee, pointed her in the direction of the flag, gave her a club, and told her to swing. Whether she missed the ball or not, he said “great swing.” He then hit his ball and repeated the same sequence with her after he dropped her ball next to his. When asked about golfing, she gave a bright smile and cooed with joy as she had little expressive language any longer.

Personalized therapy for Alzheimer’s is right under our nose. Productivity is more important than competence. We need to stop the power struggles. We need to understand the client and serve his or her needs.

I recently received this e-mail: “Last Friday, at a dinner party, one of the guests who recently underwent bypass surgery was talking about his medical history leading up to this. He told us he had been put on Lipitor to control his cholesterol and one of the side effects he noted was that he was suffering short term memory loss. He spoke with his doctor, who told him to stop taking the Lipitor. As soon as he did this, he noted that his short term memory improved and it is now totally restored. This man is in his 50’s. My question to you is: Have you heard of such a reaction to using Lipitor? I was not aware of such a problem. I have looked up the drug and do not see any mention of such a side effect.”

The brief answer is that statin drugs like Lipitor do cause memory loss in some who take them. Statin medications (generic names) include Lipitor (atorvastatin), Zocor (simvastatin), Mevacor (lovastatin), Crestor (rosuvastatin), Pravachol (pravastatin), and Vytorin (ezetimibe/ simvastatin). It is estimated that 25 million people worldwide take statin drugs to lower cholesterol in the hope of reducing risk for heart attack, stroke, and dementia. The most common side effects of statin drugs are muscle pain and weakness. The second most common side effect is cognitive problems and memory loss despite the failure to include this side effect in the Physician’s Desk Reference.

The cognitive effects are complex. Some taking statin medications report an inability to concentrate (one of my clients reported having to think of what to do with their feet while climbing stairs when on statin medications) and “feel they are developing Alzheimer’s disease” while taking the drugs. A recent study indicated that older people with cholesterol under 200 perform more poorly on tests of mental functions than those with cholesterol over 240. Some have reported extreme amnesia lasting for 6-12 hours. Others report mood swings (very low cholesterol has been associated with suicide and violent behavior).

Cholesterol is essential to normal brain function. Indeed, there are cells in the brain that synthesize cholesterol. It is unclear why some who use the drugs develop cognitive problems and some do not. There are thousands who report these side effects but millions who use statins. On balance, most physicians see little concern as they feel that the benefits outweigh the risks. But even here, there is controversy as there is little evidence that statins benefit women or that these medications extend life for those over 70.

Most cases of memory problems from statin drugs appear to occur within 60 days of starting to take them. Fortunately, most return to normal memory function once they stop taking the medication. The longer you have taken the medication the slower the recovery. The best course of action is to talk with your physician if you are concerned. That way you can make an informed decision based on your medical risks and benefits.

It’s that time of the year again. The top ten lists of the year are out to help us recall the year. It triggers both year and life review and stimulates our long term memory of where we have been, where we are, and where we are going. Seneca said it well. “It’s not that we have a short time to live, but that we waste a lot of it.” This of course comes with end of the year resolutions that often amount to trying to do better next year.

I often remark during my talks that the most grievous memory error is “trying to remember.” Instead, plan on how you will remember. Good intentions often fall short when a well placed post-it note would serve us well. It’s the same for New Year’s resolutions. A resolution needs to be a planned act. For example, if you want to get healthier in the 2011, make a plan to remember to exercise consistently. Get out your new calendar and mark out four times a week to exercise for the entire year. Let life then fill in around this goal.

As another example, I was talking to a person with mild memory loss that still enjoys paying his bills. However, he is struggling a bit more than in the past and wants to keep paying his own bills as long as he is able. The plan we made was to have him consolidate bill paying to one day a month. He will create a folder that is in an assigned place. Finally, he will mark the day and times for bill paying for 2011 in his new calendar.

I am also taking my own advice this year. As many know, I still try (the catch word) to schedule my own appointments. This is a multitasking challenge that means I make mistakes and forget. My plan is simple. After the first of the year, I have someone who will schedule my appointments. This will save me and those who want to catch up with me a great deal of frustration. It will also help my memory in the New Year.

The idea is simple. A resolution should be a plan that you execute during the New Year. Choose your most important goal and mark your calendar now. This all reminds me of the concept from one of my favorite movies, “What About Bob?” The idea is to take “baby steps.” Think small. Be concrete and specific in setting your plan. And don’t forget to mark it in your 2011 calendar. You can build on it later.

I recently had a client comment on my lack of enthusiasm for using a GPS device while driving. Instead, I suggest drawing schematic routes to your destination including major landmarks. She asked why I felt this way, as she uses her GPS regularly and does fine. The answer is complex. There are so many forms of technology that clearly help us function in everyday life. Smart phones, computers, and GPS devices add convenience and help us overcome limits.

But there is a downside. These aids can also make us less aware of what’s around us. Christopher Chabris and Daniel Simons discuss the issue in their book, The Invisible Gorilla. They describe “inattentional blindness” as the trade-off of being so good at focused attention that we see far less than we think we do. Our brains as so good at focusing that we only see what we are prepared to see. As we drive, we focus on the presence of other cars and traffic controls and we miss two wheeled vehicles and pedestrians that are in plain sight. Once on my way to classes while in graduate school, I was hit by a panel truck turning right. They didn’t see me right next to them because they focused their attention on making the turn to their shop.

The problem is that it is hard to look for multiple things at once. As a rule, our brains are built to efficiently do one main task at a time. Simultaneous processing of information leads us to miss the unexpected and adds to the time it takes to act such as to move your foot to the brake. The small amount of time for multitasking in a car can mean the difference between life and death or injury.

Take for example the use of a cell phone while driving. Most of the time, using the cell phone doesn’t cause an accident. Therefore, we become confident that we can drive and talk at the same time. Studies show that subjects missed an unexpected object 90% of the time while talking on a cell phone. And it doesn’t matter whether it is a hand held or a hands free cell phone. It is not the nature of the phone that is the problem it is the limits of attention. The phone draws us somewhere else.

Back to the GPS. The in-car navigational systems do help us find our way but they can also lead us to drive without noticing where we are going. There are examples of drivers using a GPS and driving onto a railroad track without noticing. A British truck driver who wedged his truck in a tight street provides another example. It took him three days to get out of the truck. Finally, there are the drivers who were using their GPS to find their way past warning signs of road closure and into the Avon River.

I am all for technology. But we must respect its limits as well as its advantages. For those with failing memory and cognitive skills, it is better just to drive. Driving familiar routes and driving only in the day may be the best solution for them.

What should you expect in a memory evaluation? A good evaluation doesn’t hurt and you can’t pass or fail. It’s not like going to school. The essence of the evaluation is to determine how your memory and thinking skills are working. You should be comfortable and family members should be able to sit in and add their observations. There are three parts to a thorough evaluation: interview, formal evaluation, and feedback.

There are several objectives for an interview about memory. First, the interviewer should put you at ease. Ideally, you and someone who knows you well (in case you forget that you forget) are interviewed at the same time. Part of the interview is to provide background information such as birth date, education, work history, health history, etc. This information also provides an assessment of your long term memory (e.g., facts about yourself and your immediate family). The interview should also ask the obvious question of how is your memory of both you and someone who knows you well. There should be a narrative description of the pattern of unfolding of the changes in your memory, Finally, the interview should obtain a survey of adaptive skills such as short-term memory, higher level skills like doing a checkbook, and personal care skills.

The formal evaluation focuses on memory and complex and basic thinking skills. Several memory tests need to be included to cover such memory systems such as primary (e.g., numbers repeated back), working (e.g., numbers repeated backwards), long-term memory (e.g., knowledge), attention, and short-term memory (e.g., learning and recalling lists of words or designs). The evaluation should also include a global measure of thinking such as the Dementia Rating Scale as well as evaluations of complex language (e.g., judgment, reasoning), as well as nonverbal reasoning (e.g., making designs). Finally, the assessment should provide an overview of basic language (e.g., naming, writing, and spelling), arithmetic, and constructive skills (e.g., drawings).

The most important part of the assessment is the feedback. Once the information is scored and interpreted, you and important family members should meet with the memory expert and review in detail the findings as well as their implications. You should be able to ask questions and leave understanding the strengths and weaknesses of your abilities. Evaluations so often focus on what doesn’t work that it is easy lose track of the need to understand what still works. Your strengths are used to build a treatment plan that fits you. The treatment plan should include a review of external memory supports that will work for you. It should include a realistic discussion of medications and life style factors that may improve your outcome.

Most of us are proactive about our health and finances. We need to do the same with our memory. Act before your memory is a problem. If you are over 65, have a family history of memory loss, have had a head injury, or are worried about your memory, seek an evaluation. Finally, track your memory over time and revise your plan as needed. Don’t forget that the first step in good treatment is to seek a thorough evaluation.

The first stages of Alzheimer’s disease are marked by decreasing self-determination. As one proceeds through early stages, there is an increasing need for external supports but independent survival is likely. In the later stages, independent survival in the community is no longer possible. The plans and skills learned in the early stages will determine, in part, the smoothness of these stages. The later stages are clearly marked by more than just memory loss. Indeed there are multiple skills lost (e.g., judgment, reasoning, planning, learning new skills or facts). There is often little self-directed engagement. Palliative memory care (e.g., day programs, placement in memory care units) is necessary, as short-term memory is severely impaired to the point that the forgetful person no longer is aware of forgetting. Each repeated question or comment is made for the first time from his or her perspective

Early dementia is the fifth stage of Alzheimer’s disease. A person in stage four often cannot recall major aspects of their life such as their current address, the present weather conditions. If he or she lives alone without external assistance, they will not survive as they can’t prepare meals, pay bills, etc. However, they can attend to personal care such as bathing, dressing, and toileting. Overlearned skills continue to work as long as there is external support and prompting. The ability to participate in conversation that relies on long-term memory remains quit good as long as the audience is small and attentive. Although skill may be compromised, the person in stage four can participate in games and enjoys movies, TV shows, and sporting events that they enjoyed in the past. If one plans activities based on the interests and skills during earlier stages, one can have a very good life by truly living in moments with activities they enjoy. This stage may last an average of about two years.

Middle dementia is the sixth stage of Alzheimer’s disease. The ability independently to choose appropriate clothes is compromised. Independent bathing and hygiene can no longer be counted on. Short-term as well as long-term memories are compromised. They know their own names but confuse identity of others. However, they still can be engaged in lifelong interests as long as the focus is on productivity rather than competence and someone else directs them toward an activity based on a skill or interest that still works. Music, old TV shows, pets, and children can provide much needed stimulation and engagement as well as reduce agitation. This stage averages about 2.5 years.

Late stage dementia is the seventh stage of Alzheimer’s disease. If one lives into stage seven, language skills and production are severely compromised. The ability to walk without assistance is lost. The ability to feed oneself is lost. Depending on the care, this stage may last up to five years. Fortunately, most of those with Alzheimer’s disease do not live into this stage as other events such as stroke, heart disease, and cancer may intervene. Hospice services are often useful adjuncts to care.

Although we cannot control whether we will end our life with progressive decline, we can proactively make plans for a better life if we start early. Just as we start financial planning and healthcare early, we must be monitoring and planning our memory resources early. Don’t listen to those that lament that there’s nothing you can do about Alzheimer’s disease. The real problem is that we often wait until we can do nothing to start the plan to have a better if forgotten life.