If you are the caregiver of a loved one with Alzheimer’s disease, there are many things that you need to know – how to care for them physically, mentally and emotionally and how to get them the clinical care they need. Some of the most important things that you need to know aren’t medical, they are the keys to knowing how to interact with your loved one and provide the humane, compassionate care they need. Here are the four most important things you need to know about Alzheimer’s disease that will help you care for a loved one with it.
1. The disease worsens over time. Although this is difficult to contemplate, it actually helps to face this at the outset. Alzheimer’s disease is a progressive disease with worsening symptoms. As good as your loved one is today, he or she will be worse in the future. While this knowledge can be a source of desperation, it can also be a source of control. If you know the disease worsens you will not be shocked when it happens. You have time to get used to the idea. You have control over future planning and care arrangements. You cannot stop the progression of Alzheimer’s disease but you can plan for care that will accommodate your loved one’s needs as they become more complicated from the disease.
2. Your loved one is still in there, inside the disease. As Alzheimer’s disease robs your loved one’s ability to remember people, participate in activities of daily living, and communicate it’s important to remember that they are still “in there”, deep inside the disease. He or she can still experience joy, gain happiness from music and laughter, and feel the love from your compassion and warmth. You will be able to calm them when the disease causes them to be agitated and anxious. You can redirect them when they become restless or have an angry outburst. It may seem like a cliche, but love and compassion do indeed go a long way in helping an Alzheimer’s patient. There is no medicine that can treat the disease. Only human interaction can make a difference.
3. Personality and behavioral changes are not unusual. Alzheimer’s disease has three stages; early, middle and late. Each carries with it ever-changing personality and behavioral changes that may fluctuate rapidly and widely. A person with Alzheimer’s disease may become extremely confused, suspicious, fearful or paranoid.
- Early stage: Irritability, anxiety, and depression are common symptoms.
- Middle stage: Aggression, agitation, and paranoia become more common. Your loved one may believe that family members are stealing from him or her or that strange people are in the home. They may lose their inhibitions and approach strangers to talk or ask for things.
- Late stage: In this stage, Alzheimer’s patients are often non-verbal and confined to bed or a wheelchair. It is not uncommon for them to have angry outbursts or cry.
4. Everything changes by the minute – communicate with them based on their reality. Alzheimer’s disease removes the ability to judge time and space. Patients often do not know where they are or who they are. They may be sitting in a skilled nursing facility but believe they are in their childhood home. They may believe they see a long-dead relative or spouse. Looking out the window at cars they may think they are bicycles or not see them at all. None of this prevents you from talking to your loved one; it just requires a bit of imagination.
The most important thing to remember is not to disagree with your loved one. You cannot change what they think and you cannot correct what they see or hear. Alzheimer’s is a wave, so get on a virtual surfboard and ride it with your loved one. If your mother says she saw her deceased husband today, ask how he is and what they talked about. If she says that someone stole her purse, tell them you will call the police and have them take care of it. These are the ways in which you can comfort and soothe your loved one through the ravages of Alzheimer’s disease.