The statistics on Alzheimer’s disease are staggering if not frightening. According to Alzheimer’s Society and the Alzheimer’s Association, the progressive disease has the following statistics.
- It is the sixth leading cause of death in the Western world.
- One in three elderly people dies with Alzheimer’s or another dementia.
- In 2015, more than 15 million care providers provided an estimated 18.1 billion hours of unpaid care.
- Every 66 seconds, someone in the West develops the disease.
- Family of sufferers spend more than £5,000 a year caring for someone with the disease. Family caregivers go without holiday and sometimes meals to provide this care out of pocket.
- In 2016, Alzheimer’s disease and other forms of dementia will cost the US $236 billion.
- The disease kills more than breast and prostate cancer combined.
- Of the 5.4 million Americans with Alzheimer’s, an estimated 5.2 million of them are age 65 and older, and approximately 200,000 individuals are under age 65 (younger-onset Alzheimer’s).
- One in nine people age 65 and older has Alzheimer’s disease.
- By mid-century, someone in the United States will develop the disease every 33 seconds.
While it is near impossible to know what it is like to have Alzheimer’s or dementia, you can learn what it might be like at Next Avenue. There you can see some of the characteristics that define a patient with dementia. The resource discusses a possible tour people can take to see what it is like having dementia.
Looking at the results of people who took the tour, the contrast between how they felt they would manage simple tasks at the beginning of the tour is a complete difference compared to the end. Before the virtual tour, almost all the tour participants said they could handle simple tasks life called for. After the tour, however, they said they could not handle the required tasks. The conclusion was that those with dementia and Alzheimer’s will wander, require help with simple tasks such as going to the bathroom or eating, become agitated, or at times be unable to vocalise something and talk to themselves to clarify their thoughts.
One of the underlying conclusions of the virtual tour results was that we grossly underestimate how to manage those with these diseases. For most, the way we think we should behave around a person with such a condition is very different than the way we should actually behave. This is a mistake I made when my aunt developed dementia. I leaned more toward treating her like I would a child than a respected adult.
My Personal Experience
My aunt worked in the television industry in New York City for over thirty years, ascending to the title of news director. She made six figures, won Emmys, and was friends with some well-known public figures. Sadly, she developed younger-onset dementia in her fifties. However, she was able to compensate due to her intelligence and the support services she received as part of her job, including transportation, makeup, house cleaning, and more. It was not until she was fired that the dementia worsened.
Thinking she was let go for age discrimination at 59, she sued. She lost this three-year case, which ended up costing her her entire nest egg. She moved to where my parents and I lived to be closer. What followed was scary until we received the official diagnosis of late-stage dementia. My aunt, once a strong and independent woman, would lose personal IDs multiple times, get into car accidents, wander the streets, hallucinate, repeat things, not open bills or pay them for months or years at a time, and was often dishevelled. When we finally moved her to a care facility, her apartment was so dirty and crowded with junk that it took a hazmat team to clean it all up.
For a long time, I never knew how to relate to my aunt. I would dismiss her as having gone off the deep end. I would ignore her, and when I saw her, I would remain quiet and try not to say much. If I needed to interact with her, it was with disgust and frustration. I would often try to challenge her on lies, call out hallucinations, and set her straight on stories she told wrong. Once I learned more about her diagnosis, however, the way I treated her changed for the better. Any discomfort I had went away, and I enjoy time with her nowadays. Below are some tips on how to behave around a loved one with dementia or Alzheimer’s.
People with these conditions are just as frightened as you are. They know they cannot do something, but they are frustrated and confused as to why. If you act anything other than human around them, it will only exasperate their present confusion and fear. Treat your loved one as if they were anyone else. If they see someone at a table near them get up to leave, kindly remind them it is not time to go yet. If, for example, they start to struggle with a memory or word, help fill in the blanks with no judgement. Treat your loved one with dignity and nothing less.
Acknowledge False Truths
Dementia and Alzheimer’s patients will tell stories that are false. When this occurs, human nature is to commend, judge, or correct. This is a mistake as it makes the person feel more confused. Instead, listen to the story or statement and recognise it in your mind as a false truth. If the story sounds like something that may be harmful to your loved one, investigate it but do not challenge their truth.
Distract and Redirect
There will be times when your loved one cannot verbalise something or struggles to recall how to do something. When things seem like they are getting too frustrating, redirect or distract the person. Bring up how nice something they are wearing is, change the subject, or ask them a question about something new. This will save them from the feeling of inadequacy and depressed mood that dementia can cause.
Keep it Positive
I am fortunate that my aunt has a sunny disposition despite her dire condition. This allows her to find temporary joy in an otherwise bleak experience. However, not every dementia or Alzheimer’s patient is in a positive state of mind. It is your job to keep things positive. Try to make the environment and situation as light and enjoyable as possible. This will help the person stay more positive, which is important for their overall mental well-being. It allows them to experience something nice while living with something so mean.
Keep it Simple and Clear
When communicating with your loved one, keep it simple and keep directions to one-step directions. People with dementia and Alzheimer’s need clear instructions because they struggle to remember complex and multi-step messages. Keeping it simple will help them accomplish little tasks and feel some sense of capability that can lead to some confidence building.
Be Kind, Funny, and Reminisce
When interacting with someone who has one or both of these diseases, be kind. Act with encouragement, empathy, and support. Make them feel loved and okay, as the confusion and anxiety that comes with these conditions can often make them feel anything but that. In addition, a sense of humour goes a long way. Laughter really is the best medicine. It enhances mood and can distract your loved one from their suffering, even if for a moment. Moreover, someone with one or both of these diseases may not remember what happened thirty minutes ago, but they may remember something from forty years ago, which can be very soothing for them.
At Telecare24, we care about your loved ones just as much as you do. In addition to providing you with useful information, we have the tools you need to ensure your loved one is safe and well cared for. Using modern technology, we allow you to monitor your loved one and ensure they stay safe from things like wandering to an unsafe location. Browse our careline plans or contact us today to see how we can help relieve your anxiety and provide peace of mind for your loved one.