“Being a Primary Caregiver for a relative with Alzheimer’s disease – The Long Goodbye”

“I am a Carer.” There you go, “straight off the bat,” as they say. I have an elderly aunt who suffered and passed away from the advanced stages of Alzheimer’s disease. It is a desperately cruel disease (most are, I know) in that it robs people (by and large) of their dignity and their independence at a stage in life when they need it most.

Alzheimer’s disease

In the Uk, the Alzheimer’s Society claimed in a recent survey that over 750,000 people had Alzheimer’s and related dementia problems. In the United States, it is calculated that an estimated 5.8 million people have Alzheimer’s and that this figure has doubled since 1980.

Further alarming statistics highlight the fact that it is possible that in the US alone, the number of people who have Alzheimer’s could more than double to between 11.5 and 13 million sufferers by 2050.

Alzheimer’s disease is what is described as a progressive disorder of the brain that gradually destroys a persons’ memory, ability to learn, reason, make judgments, communicate, and carry out daily activities. As the disease progresses, sufferers may also experience changes in their personality and display such behavioral changes ranging from anxiety, agitation, or suspicion right up to and/or including delusions and hallucinations.

Although there is currently no cure for Alzheimer’s, new treatments are on the horizon as a result of accelerating insight into the biology of the disease. Research has also shown that effective care and support can improve the quality of life for individuals and their caregivers throughout the disease from diagnosis to the end of life.

Considering the long term implications for people living with Alzheimer’s, the hidden sociological impact will, in reality, be born on the shoulders of those who will be caring for the sufferers for it is indeed a bittersweet irony that those who care for the sufferers, in reality, suffer more than the sufferers do themselves.

This fact has been mostly responsible for another survey finding recently, and that was the fact that Americans are equally afraid of caring for someone who has Alzheimer’s as much as they are of developing the disease themselves. Approximately 1 in 2 American adults are more apprehensive of caring for a partner or loved one who has developed Alzheimer’s. Just less than 1 in 5 American adults have indicated that they are more afraid of getting the disease themselves (17%).

The real problem from a carer’s perspective is that no two people experience Alzheimer’s disease in the same way. As a result, there is no one approach to caregiving. Your caregiving responsibilities can range from making financial decisions, managing changes in behavior, to helping a loved one get dressed in the morning.

Handling these duties is hard work. However, by learning caregiving skills, you can make sure that your loved one feels supported and is living a full life. You can also ensure that you are taking steps to preserve your well-being.

Caring for someone who has Alzheimer’s disease or another illness involving dementia can be very difficult, time-consuming, and stressful – (severe understatement here). Here are some more things a caregiver can do to help the person with Alzheimer’s disease while also reducing the substantial burden that comes with caregiving:

• Stay Informed – Knowledge equals power. The more you know about Alzheimer’s disease or any other signs of dementia, the better you can prepare yourself to deal with problems that may arise.
• Share concerns with the person – A person who is mild to moderately impaired can assist in his/her care. Memory aids and other strategies can be created by the person with dementia and the caregiver together. This is easier said than done, I know, but you must give it a try. However, and this is a big but (no laughs here please), you must realize that you are probably dealing with a person who, if they have any cognizance at all, will be in denial.
• Solve problems one at a time – A multitude of problems may occur that may seem insurmountable at the time. Work on one specific problem at a time — you do not have to solve every problem all at once. As the saying goes, “Success by the inch is a cinch, by the yard it is hard,” and in this case, this has never been truer.
• Use your imagination – One of the keys to handling this disease is your ability to adapt. If something cannot be done one way, try another. For example, if the person only uses his or her fingers for eating, do not keep fighting; serve as many finger foods as possible!
• Establish an environment that encourages freedom and activity within limits Try to create a stable, balanced schedule for meals, medication, etc. but also encourage activities that the patient can handle, such as taking a walk or visiting an old friend. Remember, the person with AD is not the only one whose needs must be taken into consideration. You, as a caregiver, have needs and desires that must also be met. First, try and find some time for yourself. Even though this suggestion may seem like an impossibility, find some time during the week where you can have someone else watch the patient — be it a relative, friend, or neighbor — and do something for yourself.
• Avoid social isolation – Keep up contacts with friends and relatives. It is easy to get burned out when it seems like you have no one to turn to. Another way to establish contacts is by joining the Alzheimer’s Association or other such support groups. Talking with other families who share many of the very same problems can be reassuring as it helps you know you are not alone in your round-the-clock struggles.