Having witnessed my grandmother being tortured by the devastation of Alzheimer’s disease and my mother serving as caregiver, I can literally say it took a piece of my mind. Between my grandmother not recognizing me and watching my mother drained mentally from the burden of caring for someone who did not recognize her as the daughter, it’s clear a “Loss of Memory” is a loss of life for everyone involved. Dementia is described as an umbrella of symptoms that occur when the brain is affected by certain diseases or conditions. There are literally many different types of dementia although some are far more common than others like Alzheimer’s, Vascular Dementia, Dementia with Lewy Bodies, and Fronto-Temporal Dementia. What we see however as those not medically experienced in Dementia is someone not having all of their mental faculties…which is disheartening. Not excluding those who have to care for love ones having dementia, that activity is such a “Loving Burdensome” that many feel there needs to be more attention paid to the caregiver. What makes Dementia and the various forms of it so devastating is that people diagnosed with it can continue to have the disease for the remainder of their lives…a drip drip debilitating devastation. Alzheimer’s disease for example causes changes in brain tissue that lead to direct, negative effects on 3 main areas of brain function:
- Cognition: one’s overall perception including memory, visual and spatial orientation, and speech
- Activities of daily living (ADLs): one’s ability to perform everyday tasks, such as dressing, paying bills, driving, and preparing meals.
- Behavior: how one acts in social situations
Because of the many troubling symptoms of dementia (e.g. Alzheimer’s) it is considered a disease that affects both the individual and their entire family. As I’ve mentioned for the caregiver who has the responsibility of caring for someone with dementia, often times symptoms may go unnoticed because they are mistakenly attributed to “Grandma’s just getting old”…when in fact grandma has a more serious problem than just forgetting her purse at the supermarket. The insidious problem of Dementia is that eventually symptoms if left untreated can progress overtime and have the classic “snowball effect” where mild symptoms can become severe.
Alzheimer’s…we’re still learning
One of the challenges when facing the prognosis that a love one has dementia is distinguishing whether or not someone’s loss of memory is just a normal-aging process or something more serious. While Alzheimer’s for example is associated with aging, not all elderly people develop AD. Many individuals experience changes in their ability to remember new information, as they grow older. This is considered a natural part of the aging process, in fact in almost all individuals a measurable decrease in brain size and neuronal mass begins at about age 60…which may explain this natural loss of memory. Although affecting the ability to remember new information, age-related memory loss will not hamper one from living independently or functioning in social or professional environments. While someone with age-associated memory loss may have temporary lapses, he/she will eventually be able to recall the forgotten information. Yet, someone with Alzheimer’s disease the short-term memory loss is rapid and he/she is likely to forget whole experiences, rather than just certain details. This memory loss, as well as other symptoms of dementia, will eventually affect all areas of one’s daily life. What makes Alzheimer ’s disease so intriguing is that every person diagnosed with the illness can present different symptoms at varying degrees. For example, a person with AD may be in a depressed mood for a short period of time due to the realization that memory loss is beginning to occur or may suffer from a longer lasting depression. Depressed mood usually occurs in the mild to moderate stage of AD. Depression however, is a disorder that lasts a long time and is typically found in the moderate to severe stages of Alzheimer’s Disease. So, you understand why Alzheimer’s is not only debilitating for those unfortunate to be diagnosed with it…dealing with the various presentations of it can lead to nightmarish consequences. The current diagnostic techniques for Alzheimer’s Disease have provided healthcare professionals with an accuracy rate of about 90% which isn’t all that bad, however, there are several common challenges when diagnosing AD in the early stages:
- The individual and caregiver usually develop compensatory mechanisms to mask Alzheimer’s Disease symptoms (e.g. “Oh, Mom is just getting old…)
- The healthcare provider (e.g. physician) doesn’t observe the individual and caregiver in the home setting so he/she does not get a true sense of the individual’s capabilities (e.g. caregiver grooms and dresses the individual)
- The healthcare provider (e.g. physician) does not interact with the individual frequently, and therefore cannot identify the slow progression of the disease.
These 3 examples are not all encompassing, but illustrate common situations that can make diagnosis challenging.
Improving “Quality of Life”
There are a wide range of diagnostic tools and techniques used to detect the presence and help make an accurate diagnosis of Alzheimer’s Disease. Conversely, there are a smorgasbord of pharmaceuticals that help alleviate some of the symptoms associated with Dementia…but remember there remains no cure for Alzheimer’s Disease. So, as it stands the measurement of success for those being treated for their symptoms of Dementia entirely lies in their ability to have some semblance of “quality of life”. As we discussed earlier one of the 3 main brain functions associated with quality of life are the Activities of Daily Living (ADL’s). Success for many individuals with severe cases of dementia is just having the ability to dress themselves, pay bills, or drive a car…each of these can have a profound effect on mental behavior. We also noted that depression often presents itself when dementia is diagnosed, so you can imagine all of this can have a profound impact on one’s quality of life. The most relevant factor to healthcare professionals and caregivers when they assess the success of treatments and the individual’s progression from stage to stage is their ability to do the most mundane things we ALL take for granted. Getting back to the caregiver, quality of life is pursued on both ends from those who have dementia and the love ones responsible for their well-being. Brief definition: A caregiver is defined as “anyone responsible for the well-being of an individual”. This concept of caregiving is especially relevant to Alzheimer’s Disease since 1 in 10 American adults has a family member with AD who will need a caregiver. The caregiver plays a critical role in the management of dementia because Alzheimer’s Disease is such a unique disorder from most other diseases in that the concept of caregiving has been redefined. Other diseases, such as cardiovascular disease or cancer, involve caring for an affected patient to some degree. However the AD caregiver, whether it is a family member or friend, is starkly different. The caregiver will inevitably become completely responsible for all aspects of care and daily living as the condition of the individual with Alzheimer’s Disease declines…so you see the perspective of “quality of life” impacts everyone involved. The AD caregiver is instrumental and vital in all stages of the disease because individuals with Alzheimer’s Disease are typically:
- In denial so the caregiver must take the initiative in seeking help early in the disease process
- Not involved in their own treatment process because they may be unaware of forgetful, causing the caregiver to take over the management of treatment
- Unable to make decisions regarding day-to-day living so the caregiver must manage this part of the life of the patient with AD as well
- Healthy-looking to those uninvolved, yet incapable of functioning normally
- Slowly declining over the course of several years, to the point of needing total care
The AD caregiver is involved in the entire process and continues usually until the individual unfortunately passes away. As a result, the caregiver becomes just as important (if not more so) in the trek of improving the quality of life of the love one with Alzheimer’s Disease…while all the while trying to sustain theirs.
“Grandma keeps calling me a different name every time I see her.”
“Mom just asked me where dad is…Dad died 12 years ago.”
“Grandpa has trouble dressing himself.”
Loss of Memory…loss of LIFE
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