Strengthen your caregiving skills through knowledge
It is estimated than in America, there are at least 40 million family caregivers. The National Alliance for Caregiving (NAC) and the AARP Public Policy Institute conducted a survey and reported the following reasons why people require a caregiver:
- Three in five have a long-term physical condition
- More than one-third have a short-term physical condition
- One fourth have a memory problem
- In addition, the study found that over one-third of care recipients present with more than one on-going illness
These health conditions include (but are not limited to) cancer, Alzheimer’s disease, Parkinson’s disease, traumatic brain or spinal cord injuries, stroke, advanced heart disease, multiple sclerosis, advanced diabetes, debilitating arthritis, and mental health and psychiatric disorders.
I believe it is important for all caregivers to learn about and understand the condition/illness/injury that affects their recipients. Knowledge will strengthen your caregiving skills.
Over the next several weeks, I will present a general summary of some of the most common conditions that caregivers encounter. I hope the information will encourage you to learn more as you seek to excel in your vital role.
Because I receive so many questions about Alzheimer’s Disease, I will start there.
Where did AD get its name? In 1906, German psychiatrist and neurologist Dr. Alois Alzheimer performed an autopsy on a 51-year-old female, who as his patient had exhibited symptoms of memory loss, language problems and unpredictable behavior. Along with shrinkage around the nerve cells in her brain, his findings include “misshapen clumps of protein” and “twisted bundles of fibers” which are now referred to as beta-amyloid plaques and neurofibrillary tangles. Today, these are considered the distinguishing characteristics of this degenerative brain disease. In 1910, Dr. Emil Kraepelin – a German psychiatrist and colleague of Dr. Alzheimer’s – classified these findings in the second volume of General Psychiatry. This was the first time this particular type of dementia was described and Dr. Kraepelin named it Alzheimer’s Disease.
What is the difference between AD and dementia? The word dementia originated it the late 18th century from the Latin demens/dement which had the meaning “out of one’s mind.” It is sometimes associated with mental illness, senility and to a lesser degree, insanity. Its definition is “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.” Remember this: all AD is dementia, but not all dementia is AD. AD is the most common cause of dementia and it is estimated that between 60% to 80% of all patients with dementia have AD. Other causes of dementia include Parkinson’s and Huntington’s disease which are also degenerative neurological disorders; vascular disorders that affect blood circulation in the brain; traumatic brain injuries; certain infections of the central nervous system and prolonged alcohol or drug use.
What are the most common symptoms and the course of the AD? Ultimately, this disease destroys memory and thinking skills. The symptoms usually start slowly and continually worsen over several years. Generally, a person lives four to eight years on average after the disease strikes. Loss of recent memory may be the first clue. As the disease progresses, many other mental skills are affected such as difficulties with language; disorientation including wandering and getting lost in familiar surroundings; changes in mood and behavior; loss of motivation; neglecting self-care; and withdrawal from family and friends. Eventually, the person will lose the ability to control bodily functions. They will sleep a lot and may get their days and nights mixed up. Eating and swallowing become difficult and appetites plummet. At some point – probably sooner rather than later as the disease advances from mild/early to moderate to severe stages – the person will require a full-time caregiver. Currently there is no known cure and death is inevitable – although the exact cause is usually attributed to external factors that are results of the overall physical deterioration of the body, such as infected pressure sores or pneumonia.
Is AD a normal part of aging? No. However, the older one lives, the more chance he or she will have of developing AD. Beginning at age 65, the risk of AD doubles every five years. It is estimated that one in fourteen people age 65 or older and one in six people age 80 and over have AD. Over age 85, the risk increases to nearly one-third. Almost twice as many women as men have AD. One reason – but not considered the only reason – is that women on average live longer than men.
What are the risk factors for AD? Brain changes, including shrinkage, loss of healthy cells and the presence of beta-amyloid plaques and neurofibrillary tangles – all of which Dr. Alzheimer recognized – cause the symptoms of AD. Unfortunately, scientists have not yet discovered what causes these changes. The following details are a bit complex but may help you to better understand the process.
In a healthy brain, beta-amyloid plaques are sticky clumps of proteins that break down in healthy brains. In the brain of a person with AD, they build up between the nerve cells. Neurofibrillary tangles are twisted fibers inside brain cells that prevent nutrients and other needed substances from performing their normal function by preventing them from moving within the cell. While scientists have ascertained those facts, they still do not know if these changes in the brain cells cause AD or occur as a result of AD. They have determined that brain cells affected by AD produce a decreased number of chemical messengers (neurotransmitters), reducing effective messaging in the brain.
Earlier, I noted that both age and gender are risk factors. Others include a family history of AD, although the numbers are not significantly high in this category, just increased over those who do not have a close family member who has had AD. As more research is done, scientists are suggesting a connection between life-style – especially from middle age on and the incidence of AD. This is all about healthy lifestyles, and you know the main points: regular physical exercise; good nutrition that enables you to maintain a healthy weight; not smoking and avoiding alcohol. Studies have also suggested that keeping mentally active (learning new things, reading, playing an instrument, doing puzzles, binge-watching television (uh oh – that last one is questionable), etc. and maintain an active and enjoyable social life can help reduce the risk of developing dementia.
One more thought – several decades ago we all heard that aluminum caused AD. Some people still sincerely believe that. Even though many studies have been done and most experts agree that aluminum does not pose any threat in regard to AD, the idea is still out there.
What are current treatments for AD? This year, the National Institute of Health will spend almost three billion dollars on research for a cure for AD. At this time there is no cure or no known way to prevent, reverse, stop or slow the progression of AD. There are drug options to help lessen symptoms and these have shown some effectiveness for a limited time. Although they do not directly treat AD, they may help those with AD and their caregivers to cope with certain symptoms (i.e. agitation, wandering, sleeplessness) as well as improve quality of life issues. Doctors worn these should not be used until other strategies have been tried, as there can be deleterious side effects.
In my opinion the best treatment for AD is loving, patient, and knowledgeable caregiving. May God bless and strengthen you as you provide that care.
Caring Info: I have heard many pronunciations for AD from “olds-heimers” to “al-heimers” to “alzs himers” to “älts hīmərz.” A caregiver from Germany informed me that the correct pronunciation is “älts hīmərz” with the “al” pronounced as the English word “all.” That reflects British English. “Alzs himers” (the alzs sounds like “owls”) is the favored pronunciation in America and reflects American English.