"I am a Carer". So, "right off the bat," as they say, I am a Primary Carer first and an author second when I write this first article in a series. At the moment, I take care of my elderly mother, who has Alzheimer's disease and is in its later stages. It is a terrible disease, as most are, because it takes away people's dignity and independence at a time in their lives when they need them the most.
In the United Kingdom, a recent survey by the Alzheimer's Society found that more than 750,000 people had Alzheimer's or other forms of dementia. Alzheimer's is thought to affect about 4.5 million people in the United States, and this number has doubled since 1980.
More alarming statistics show that there could be between 11.5 and 13 million Alzheimer's patients in the US alone by 2050, which is more than twice as many as there are now.
Alzheimer's disease is a progressive brain disorder that makes it harder and harder for a person to remember things, learn new things, reason, make decisions, communicate, and do daily tasks. As the disease gets worse, people with it may also change in personality and show changes in behaviour, such as anxiety, agitation, or suspicion, all the way up to and including delusions and hallucinations.
Even though there is no cure for Alzheimer's yet, new treatments are on the way as scientists learn more and more about how the disease works. Research has also shown that good care and support can improve the quality of life for both the person with the disease and the person taking care of them, from the time the disease is diagnosed until the person dies.
When you think about the long-term effects of Alzheimer's, the hidden sociological effects will be born by those who care for the people with Alzheimer's. It is a bittersweet irony that those who care for the people with Alzheimer's actually suffer more than the people with Alzheimer's themselves.
This fact is a big reason why a recent survey found that Americans are just as afraid of taking care of someone with Alzheimer's as they are of getting the disease themselves. About one in two American adults are more worried about taking care of a partner or loved one with Alzheimer's. Less than 20% of American adults say they are more afraid of getting the disease than of dying from it (17 percent ).
From a caregiver's point of view, the real problem is that Alzheimer's affects different people in different ways. Because of this, there is no one way to care for someone. You might have to help a loved one get dressed in the morning or make financial decisions. You might also have to deal with changes in behaviour.
Taking care of these tasks is hard work. But if you learn how to give care, you can make sure that the person you care about feels supported and has a full life. You can also make sure you are doing things to keep yourself healthy.
Caring for someone with Alzheimer's or another disease that causes dementia can be hard, take a lot of time, and be very stressful (serious understatement here). Here are a few more things a caretaker can do to help a person with Alzheimer's while also easing the heavy burden of caretaking:
Stay informed. What you know gives you power. The more you know about Alzheimer's disease or other signs of dementia, the better you can be ready for problems that may come up.
Talk to the person about your worries. People with mild to moderate impairments can help with their own care. Together, the person with dementia and their caregiver can come up with memory aids and other ways to help. I know it's easier to say than to do, but you have to try. But, and this is a big but (please don't laugh), you need to know that you're probably dealing with someone who, if they know anything at all, will deny it.
Take care of one problem at a time - There may be a lot of problems that seem impossible to solve at the time. Work on one problem at a time; you don't have to solve all of them at the same time. As the saying goes, "An inch of success is easy, but a yard of success is hard," and this has never been more true.
Use your imagination. One of the most important things you can do to deal with this disease is to be able to change. If you can't do something one way, try it another way. For example, if the person can only eat with their fingers, don't argue; just serve as many finger foods as you can.
Create a space that encourages freedom and activity within certain limits. Try to make a stable, balanced schedule for meals, medications, and other things, but also encourage the patient to do things he or she can handle, like going for a walk or seeing an old friend. Remember that the needs of the person with AD are not the only ones that need to be taken into account. As a caregiver, you also have needs and wants that need to be met. First, try to give yourself some time. Even though this suggestion may seem impossible, try to find a time during the week when a family member, friend, or neighbour can watch the patient while you do something for yourself.
Don't isolate yourself from other people. Stay in touch with friends and family. When it seems like you have no one to talk to, it's easy to feel worn out. Joining the Alzheimer's Association or other support groups is another way to meet people. Talking to other families who have many of the same problems can be reassuring because it lets you know that you are not the only ones having problems all the time.