(Adapted from the Savvy Caregiver Training Program designed to train family and professional caregivers in the basic knowledge, skills, and attitudes needed to handle the challenges of caring for a family member with Alzheimer’s disease and to be an effective caregiver. Since 2002, it has been designated as one of the approved dementia training programs of the Alzheimer’s disease Demonstration Grants to States (ADDGS) program, which is funded through the U.S. Administration on Aging)
What caregivers can expect in the Middle stage of Young Onset Alzheimer’s
In the Middle stage of the disease, problems will be more apparent. Although some independent activities continue, people may lose track of what they started to do. They get distracted easily, and they may even start to need help with regular tasks.
People at this level still usually look good. On the surface, they appear to be performing rather normally. However, the higher thinking powers (reasoning, abstraction, planning, etc.) are more affected by the disease, impacting the performance of complex or multi-part chores. Errors show up more regularly. Tasks aren’t done as well, or as smoothly.
People at this stage of Young Onset (also known as Early Onset) Alzheimer’s usually still understand that their activities are directed toward a purpose or goal. However, they may not always be able to keep track of the exact goal and may need to be reminded. Though with enough time and help, people at this level should be able to complete most daily household tasks and self-care activities.
The disease continues to progress
As with all stages of the disease, the Middle stage extends over a long period of time, and the person’s ability to complete tasks will noticeably continue to decline. Confusion and errors are now seen more regularly. People can do less on their own, and their thinking powers are weaker.
They might proceed through tasks hastily, without considering the results. They may work in trial-and-error fashion. Or they may just freeze, not knowing where to start or what to do. Distraction and frustration may occur, especially with tasks that are complicated.
People at this level may look to caregivers for direction or assistance even with routine daily tasks, such as getting dressed. This help often means simply prompting and reminding, but it also allows you to keep tabs on the person.
They may keep a goal in mind, but usually only in activities that are simple and familiar. Attention spans will be shorter, and behavior may become unpredictable. They might retreat, become sad, or lash out for reasons that are not immediately clear. This may be emotionally difficult for you as a kind and patient caregiver, but it helps to remember that it is the disease, not the person, who is talking.
Caregiving ideas and strategies
Your observations and experiences will help determine how to guide and interact with the person, as you apply the following guidelines for Young Onset Alzheimer’s Middle stage caregiving.
• Establish routines. For a person in the Middle stage of the disease, routines are a good way to stay engaged. Simple well-structured tasks are the most helpful. The person won’t necessarily remember the tasks or the steps from day to day. However, repetition may foster familiarity. This in turn can provide a sense of safety, comfort, control and accomplishment. If you can find a few activities the person enjoys, you can initiate them repeatedly.
• Start taking over. Begin to simplify and organize tasks and activities. If you want the person to do something, set it up and tell the person exactly the steps you want him/her to do. This frees the person from the planning, but lets him/her be involved in the larger activity. Let the person make simple choices among a clear set of options, but not choices that involve multiple considerations. As the disease progresses further, you may have to take full control. You may have to do parts of the task yourself, carefully selecting the parts that they can comfortably do.
• Think about the setting. The person may be quite easily distracted at this stage. Decide where you want the person to do the task, and remove as many distractions as possible. The environment should be as simple as possible. Put everything the person needs for the activity nearby.
• Provide support. The person will need prompting. You might have to help the person start a task. It is very likely you will have to help the person stay on track. The person may need to be reassured while doing the task.
• Give directions that work. Adjust the way you direct the person to fit their diminishing abilities. A combination of verbal and visual directions may prove effective. Verbal directions should be simple, short, and concrete. Simple written notes or labels may help early in the Middle stage, but may not be heeded or even noticed later on. Visual cues become more and more important as this stage progresses. Point to the things you want the person to focus on.
• Offer gentle guidance. Careful observation will help you know when to step in to help. They might remember some things, but that memory may be inconsistent. If you have to correct or redirect the person, try to do so in a way that is supportive and that does not call attention to the person’s inability or mistakes. Or, if it’s not important, let errors go. A person at this stage is not likely to learn from their mistakes, and may just feel bad about themselves.
• Allow enough time. Be relaxed about performance. Try not to wedge too many activities into a day. It may also be useful to allow the person to rest or take a break from a task.
• Keep watch. At this level, you may be able to leave the person for a while, but it’s important to check back regularly. Also, safety checks are important. The person’s judgment is no longer strong. You’ll have to watch carefully to be sure the person isn’t using things or going places that could be dangerous.
• Accompany them outside the house. By this stage, a person who used to walk to a nearby store should not be allowed to do so alone anymore. The person’s abilities to cross streets safely, to find their way back home, to make the proper choices, and to manage money, are all compromised by now.
• Take away the car keys. This is always a difficult issue, but at this stage, people should no longer be permitted to drive. If you cannot convince the person to stop driving, use all the help you can get. People at this level have very poor judgment about things like directions, and will respond poorly in an accident or crisis, even one that they created. For the person’s own safety, consider the following measures:
– Inform your local department of motor vehicles and/or police department of the person’s condition.
– Bring in other members of the family, or even the person’s doctor, to get their support and help in getting the person to stop driving.
– Make the car less accessible by taking away the keys or disabling the car.
• Remain strong. The person may likely resist these limitations, especially with regard to driving, and take their frustration out on you. However this is a serious situation; remember you are doing ultimately doing a favor for them, and to others who are on the road. Consider redirecting the person’s attention by offering to drive them to a favorite store, restaurant or public park.