Any form of dementia is hard on the people who have it and for any loved ones around them.
Alzheimer’s disease, the most common form of dementia, not only affects people’s mental and physical abilities when they are diagnosed with it and it progresses, but also can be emotionally difficult for them as well as any friends and family.
The people going through dementia and receiving long term care may be aware, especially at first, that something is changing. Later, they may not always be aware of what’s happening as their brain deteriorates. They may have periods where they are lucid and other areas where they don’t recognize anything or anyone. Their short-term or long-term memory may diminish along with some of their abilities, sometimes throughout the day.
Friends and family can have a hard time watching the disease slowly claim much of what they love about someone, including their memories and personality. Some even call Alzheimer’s disease ‘a long goodbye,’ since it can take time, even years in some cases, for the disease to progress until someone doesn’t know where they are, what’s happening to them, or who is around them. In comparison, other terminal diseases may ravage the brain and body relatively quick, sometimes giving people very limited time to process it all or take care of any final tasks.
At this time, there’s no cure for Alzheimer’s disease, although research continues. This means that it progressively gets worse until death. Although various medications, therapies, or activities can sometimes slow down some symptoms or delay the shifts to various phases of the disease, most physical damage to the neurons in the brain remains permanent. This may mean that someone could be physically healthy but eventually unable to interact, process, or remember much about their life. At advanced stages, they may even lose some of their physical abilities, including being able to walk, eat, or drink.
Common feelings for those who have a loved one diagnosed with Alzheimer’s disease often start with frustration. It can be a challenge to communicate effectively when someone doesn’t remember you or act like you expect them to. You never know from day to day or even hour to hour how lucid they are. Even if they don’t recognize you or think you’re someone else, they may still enjoy your company. But you still may have to repeat some of the same information you’ve told them before.
People may also be affected by seeing their loved ones going through the process and feeling bad, and not knowing what they can do to help. These feelings of empathy can be common, as can feelings of guilt of not being able to do enough.
The largest amount of emotion is likely held by the person who has been diagnosed.
Some common feelings include:
- They may be tired of feeling different and not being able to find the right words or memories.
- They may not understand what’s going on around them.
- They may miss what their life used to be like.
- They may not be sure what’s next, but worried about things getting worse.
- Unhappiness at the whole situation could grow into overall anger.
- Mistrust/paranoia. Confusion or anger sometimes manifests as being suspicious of people around, such as a caregiver or family member.
The Alzheimer’s Society of the UK said feelings vary from person to person and sometimes minute to minute. But emotions can be strong.
The rapid changes in how someone feels – including those experiencing multiple feelings at once – can be challenging, since there’s a natural impulse to get people to calm down when they’re upset, even if you’re aware that saying “settle down, it’s just your Alzheimer’s disease making you feel that way” may make things worse instead of better. They may not remember that they have been diagnosed.
You can look for things to distract their attention, or attempt to have a conversation with them, such as trying to learn why they’re feeling so upset. This will provide them attention and let them share their feelings.
Getting them to focus on the present can help, rather than worrying about the future.
Trying to deal with memory loss can be a challenge but there are some positives that could emerge. They may not like hearing that the memory they’re thinking of happened decades before. But family members also might have the opportunity to learn some new stories from their past if someone shares a memory.
In the psst, medical professionals used to suggest always correcting people if they were believing they were in a different time or had different people around them. But in recent years, the thinking has changed to allow them to believe this helps them to stay calmer, and then find polite ways to change the subject or distract them.
You’re not alone
The number of people dealing with Alzheimer’s disease around the world is growing, so there are many resources available, likely even some in your community.
There’s also a variety of online information available, especially in November, which has been designated as Alzheimer’s Disease Awareness Month. It’s a month-long observance and opportunities for families, caregivers, and health care providers to share information. Organizations which also raise money and encourage research also continue to look for support.