Early Alzheimer's disease: Living Day to Day | Alzheimer's Prevention Registry

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May 1, 2016

Early Alzheimer's disease: Living Day to Day

By Banner Alzheimer's Institute

living day to day

You’ve noticed for months or even years that your person is faltering a bit mentally. Their memory is inconsistent; worse for recent events. They have a diminished sense of time. Their judgment may be less sharp than in the past, and they make mistakes on complicated activities such as driving, managing money, preparing meals, or taking medications. The person may be more emotional: depressed, argumentative, or distant at times. You’ve been to the doctor who has diagnosed your worst fear: early Alzheimer’s disease (sometimes referred to as mild dementia). 

Despite having suspected this, you are in shock. A million questions flood your mind. How long will this last? Will the person become violent? Will our children get this? What do we need to do and how will we ever know enough to cope with this? How can I make sure he/she is cared for in the home and not a nursing home? Will this bankrupt us? What do I need to do first? What help will I need and where do I turn to find it? And, am I strong enough to do this?

The answers to these questions are similar to the old joke: “How do you eat an elephant?” The simplest answer is “One bite at a time!” Most dementias progress relatively slowly allowing the care partners time to try new strategies, gain new skills from experience, and find the many available resources. In this month’s Beacon we are going to focus on some of the basics of planning care on a day to day basis. Implementing these techniques one bit at a time has been shown to decrease problem behaviors and enhance quality of life.

Fatigue

Fatigue is the leading cause of behavioral issues in dementing illness. Having an illness like Alzheimer’s disease is stressful and exhausting. The person needs to work hard to follow conversations, perform tasks, and simply try to remember what they should be doing. Having Alzheimer’s is like studying for a final examination every minute of every day. The person experiences significant fatigue even when they appear to be doing little. One of the most important habits people with dementia need to develop is the ability to take regular breaks. In early disease we encourage people to sit and read or put their feet up and relax in mid-to-late morning and again after lunch. This helps the person to have a stable mood and avoid “sundown syndrome” (a.k.a. late day confusion). Additional ideas:

  • Provide two rest periods per day, morning and afternoon. These can be simply sitting, but you do NOT want TV on during a rest period.
  • If your person is not sleeping well at night, increase the number or duration of rest periods during the day.
  • If the person wants to “sleep in” let them. Adjust rest periods accordingly.

Functional Loss, Avoiding Change

Functional loss is the inability to accomplish tasks. It is the result of deceased “executive function” in the brain. What this means is that when trying to reach a goal, such as laundering clothes, a normal brain automatically breaks the task into steps that must be done in order to accomplish the task. In a healthy individual the more we do those tasks, the less thought it takes to do them. For people with dementia the ability to determine the order of steps needed to be done is lost – especially when the person has to think about the activity. The more the person has to think about how to do the activity, the more anxious and confused they become. If you try to coach the person through the activity, the confusion about steps will become worse and people with dementia become frustrated and frightened. They know they should be able to accomplish the activity. There are several ways to help your person with this.

  • First, do not try to point out that they could do the activity yesterday or ask them to try and think about how to do the task. Do not think the person is pretending not to be able to do the activity in order to manipulate or punish you. Simply offer to help.
  • Limit the person’s access to potentially hazardous activities such as driving or managing finances.
  • Instead of focusing on the task, offer a distraction such as a cookie or another task.
  • You can try to cue the person by telling them the next step.
  • Develop a relatively predictable sequence of daily activities so that the person can use the repetition of activities to be on “automatic pilot.” While you can have changes in activities your person will probably do best when the basic activities are consistent.
  • Think twice about changing location, such as travel or having guests in your home. Think twice about modifying your home such as remodeling, updating, or redecorating as these often produce negative responses that may last weeks.
  • Accept that the person is trying as hard as they can at any given moment, despite statements that they don’t care or want to do the activity. Dementia does not make a person lazy or manipulative; it produces disability that is inconsistent

Controlling Environmental Stimuli Some dementias affect the parts of the brain that interpret what our senses learn from the environment. This means that vision, hearing, taste, touch, and smell are affected. The person still sees, hears, etc. but is progressively unable to interpret the sensory input. It is somewhat easier to understand if you imagine your eyes as a camera. They still take the picture but the brain doesn’t necessarily develop the film correctly. This results in decreased depth perception, ability to see moving objects, or not identifying common things. This is especially true of what is seen on television. 

  • In early Alzheimer’s the person may think the interactions seen on TV are real and misinterpret what is in the environment. These are not hallucinations. Before asking for medication, turn off the TV for 24-48 hours.
  • Avoid violent programs on TV; shows with dysfunctional people, overt sexuality, or continuous news channels. These can cause illusions or delusions (fixed false beliefs) that are very difficult to stop.
  • If you plan an activity with a lot of people, make sure your person stays for 30-60 minutes and has a place to go and rest.
  • Loud noises and large groups of people, such as a supermarket, mall, or restaurant can produce enormous fatigue. If you notice your person beginning to fidget, withdraw, or asking to leave, end the activity and return home.
  • If your person asks to leave a restaurant or activity, do so. Do not ask your person to wait a while as overstimulation can produce significant emotional distress.
  • Take care to limit long visits to places with boisterous children. 

The Importance of Activities

Activities are the most important aspect of dementia care as they provide for personal growth and positive self-esteem. People with early Alzheimer’s continue to need activities, outings, socialization, and stimulation.

  • In mild dementia many can participate in a wide variety of senior center activities including exercise, games, cards, arts and crafts, music, and discussion groups. Many senior centers have transportation available to allow the care partner to have time and respite.
  • Caregiver training classes can offer ideas.
  • Speak with friends about having outings or coming to visit.
  • An occupational therapy evaluation can often help with designing new activities.

Too much demand

All too often well-meaning family and friends try to “exercise the person’s brain,” asking repeated questions about the date, names of people, and current events. This can be very upsetting as the person with early dementia is usually aware of their deficits. Continuously testing a person does not help their memory and can produce anxiety and depression.

  • The best way to evaluate disease progression is to evaluate what the person is able to do, such as driving, managing money, cooking or cleaning.
  • Rapid changes in these abilities often indicate depression, infections, or other problems.
  • Research shows the single best activity to help with cognition is regular aerobic exercise a minimum of 20 minutes, three times a week. That also helps with preventing falls.

In summary, the best way to plan for care for someone with early Alzheimer’s is to organize a consistent routine, with generous activities in an environment with moderate noise and people and at least two rest periods per day. As your person’s dementia advances the above recommendations can be tweaked or intensified to continue providing care in the moderate stages.