Challenges of Dementia Care and Patient Awareness

Abstract

Dementia is a controversial issue in the medical field today. Dementia is defined as “a loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning” (DSM IV; APA, 1994). The elderly, especially, have experienced a dramatic shift in overall health awareness due to this disease. Dementia has an impact on daily living activities, among other long term and/or short term effects. People with dementia struggle to find access to healthcare facilities. The advocates for advance directives claim that it is a right of a person’s wishes regarding medical treatment, often including a living will. The opponents to advance directives feel that the individual with dementia are not fully aware of their own decisions, due to memory loss. There is some common ground between the two viewpoints. Both are concerned about the health and well-being of the individual, along with the safety issues. However, it is difficult to find the care to fulfill their needs due to the lack of health and wellness education and resources. At the end, may there be a solution to compromise with both viewpoints and take all concerns to consideration.

Dementia Care

         One of society’s most pressing health problems is dementia. It affects almost one in 10 people over the age of 65. (Sah, P. n.d.) Most commonly, in women, but some cases in men. Grandmas, grandpas, brothers and sisters, families and friends are all affected by this life changing illness, and we may not even know it. Dementia is a serious, alarming life situation, studies have provided us observations saying that dementia is the second leading cause of death in Australia. (Sah, P. n.d.) The major effects of dementia are cognitive loss, behavior changes, and psychological damage. This disorder has no cure. However, it is important that as a society we reach out to those suffering from dementia; not only the person but their families and friends. Providing, an unorthodox approach like, weekly family memory recovery events, creative engaging activities, alongside other mind enhancing hobbies. In a family oriented Monday thru Friday surrounding may be the adequate care to slow down the process of dementia.

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Have you ever woke up in the morning, not feeling like yourself? Sure it’s fair to say that a quick stretch followed by a big deep breathe may give you that “up and go”. That spring in your step, to make your way over to a good book, an empty canvas, maybe all of your good friends gather up and have a road trip, or a hobby. Before you know it that uncertainty about your passions, vanished. Unsettling to think of perhaps, but gone. What if there was no “off switch” just consecutive days where you forget how to do simple tasks such as dressing, bathing, and eating. People with dementia experience devastating changes to their lives, gradually losing their independence, intelligence, personality, and ultimately, their identity. (Sah, P, n.d.) Dementia is not a specific disease. It is an overall term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform daily activities.

The number one effect of dementia is memory loss due to the damage of brain cells. This damage interferes with the communication between the brain cells affecting how to think, behave, or feel normally. When the brain is affected that region cannot carry out its function properly. Symptoms of dementia can vary significantly between, memory, communication and language, reasoning and judgement. People with dementia may have problems with short-term memory, keeping track of a purse or wallet, paying bills, planning meals, remembering appointments, or traveling outside of their home. However, they have certain rights when it comes to their care plan and medications.

Competent dementia patients have considerable legal authority to control life and death care. They may refuse medical life support. Even when they are not in need of any life-saving care, they may expedite death by refusing food and water by mouth voluntarily stopping eating and drinking, or VSED. For people who have dementia and are no longer competent, however, control over the end of life is much less extensive. They may have written a clear advance directive for refusing life-saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life-saving care that could be refused. Chronic progressive dementia is not itself life threatening until its very final stage. (Menzel, Paul T. and M. Colette Chandler-Cramer)

History

The risk of dementia increases with age; as people live longer, more people will be at risk for dementia. Current research suggests that persons with dementia are most commonly medicated using multiple atypical antipsychotics and anticholinergic agents and that approximately 80% of physicians treat problem behaviors in dementia patients with one or more antipsychotic medications. This practice has been shown to correlate with increased falls, syncope, delirium, depression and anxiety (Kolanowski, Fick, Waller, & Ahern, 2006).              Throughout history, the concept of dementia has changed many times, and it can be traced back to the time of ancient Greece and Rome, where it was considered a very normal and inevitable part of growing old. During the Medieval age, science and research, was virtually non-existent, and there was virtually no relevant scientific commentary on age-related cognitive decline up until the 17th and 18th century, when the field of anatomical pathology saw a rapid development due to the more widespread acceptance of human body dissection, and scientists were able to observe cerebral atrophy directly. Nevertheless, up until then, those living with mental disease (including those with dementia), were confined into asylums and treated horribly. It was in 1907 that the German psychiatrist Alois Alzheimer was able to identify a series of plaques and tangles in the brain during the autopsy of a young woman, which showed signs of progressive confusion and hallucinations. Alzheimer himself, however, wasn’t convinced that the plaques were the primary cause of dementia, but more an accompanying feature. For most of the 20th century, Alzheimer’s disease was considered a rare disease, mostly afflicting younger individuals, while scientists were becoming more and more convinced that age-related dementia was caused by atherosclerosis and stroke, which was to remain the principal theory up until the 1960s. At the same time, they were also starting to recognize how age-related dementia was a separate entity from normal age-related cognitive decline. (Newman, Haza, 2018) Today, the outbreak of dementia continues to increase, ever day more elderly are diagnosed with the early onset symptoms.

Opposing Viewpoint

The opponents to advance directives feel that the individual with dementia are not fully aware of their own decisions, due to memory loss. People who struggle with dementia are also known as, in competent. That being said, their days may not be as synchronized as they would like it to be. Medical professionals, alongside family members and friends, have noticed this to be an issue more than a solution. The downside of this illness is that no matter how simple the task at hand can be, sadly they do not have any recognition of how to perform daily tasks. This can be a problem when it comes to serious terms, such as their physical and mental health. Even in jurisdictions that permit active aid-in-dying, individuals with advanced dementia are not eligible; they lack the required current competence, and they are seldom deemed terminally ill. As for the right to VSED, its very name voluntarily stopping eating and drinking is seen as excluding no competent persons. (Menzel, Paul T. and M. Colette Chandler-Cramer)

At the end of the day, dementia individuals do not have the mental stamina to determine their daily routines. In some cases, families will decide the care plan, needs of the individual along with further medications. However, medications don’t cure dementia. It may help with pain, anxiety, depression, or behavioral issues. There are prescriptions that enhance the cognitive memory. There is no scientific proof that shows how effective these prescriptions work. It is has to tell whether there is positive effect or not. Medication may help with the pain, ease some symptoms or control the behaviors, but doesn’t slow down the process of life span. There are different coping ways to help the cognitive memory other than drugs. Therapies such as rehabilitation, occupational therapy help enhance memory. 

Advocates Viewpoint

         The advocates for advance directives claim that it is a right of a person’s wishes regarding medical treatment, often including a living will. Advance Directives are under-utilized, both from the fact that few Americans have them and that health professionals don’t always rely on Advance Directives provided by patients. Many health professionals have philosophical objections to their use. (Mitchell, M.) People living with dementia are frequently under-recognized and under-diagnosed by healthcare providers; consequently, they do not receive the medical care they need, nor are they connected to essential home and community based supports. 

One option for ensuring that one does not live years in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind VSED is that forcing people to ingest food is as objectionable an intrusion on bodily integrity, privacy, and liberty as imposing unwanted medical treatment. Thus, if incompetent people do not lose their rights to refuse life-saving treatment, and if people when competent have just as strong a right to VSED as they do to refuse life-saving treatment, then people do not lose their right to VSED when incompetent either. (Menzel, P. T., & Chandler‐Cramer, M. C.) The federal duals demonstration offers opportunities to better blend funding and oversight for Medicare-funded medical care with Medicaid-funded long-term services and supports, so that people with dementia and their families can get better integrated care. (asaging.org)

Common ground

There is some common ground between the two viewpoints. Both are concerned about the health and well-being of the individual, along with the safety issues. However, it is difficult to find the care to fulfill their needs due to the lack of health and wellness education and resources. There is evidence of wide variations in the quality of care, and that for far too many dementia individuals the overall standard of care is remains inadequate and is still not fit for purpose. Almost everyone with, or living with someone who has dementia finds life difficult providing the care and support for their needs. In particular their remains a common belief that caregivers are essential for the consistency and consistency of cares. It is also important to provide a support system for families, friends and the dementia individual who are going through a hard time in life. There are ways to help the situation, it can be hard at times but finding preference on care plan, medications should be set before the later stages of dementia kick in.

Solution

         Dementia has no cure, no treatment. It is a difficult when providing care for those with dementia. The factors to help slow down the symptoms are medications, in home-care facilities, and worldwide education on dementia. People shall not hide behind closed doors, rather be more open with dementia to help regain their memory, strengths. It is essential to not be left alone during times of distress, rather provide caregivers to assist with daily living activities. Dementia is a life changing experience, difficult for the families to cope. However, there is always a way to help in these situations.

Like every other force of nature, I believe it is fair to have some sort of common ground, there will always be two sides of the coin. People will always have different viewpoints on different kinds of topics. However, the ones that really hit home are those relatives who mean the world to you, as they struggle against the life changing illness dementia. There will always be different strategies to provide car for dementia individuals. The worse part of it all is when they no longer remember how to make decisions. A solution would be to set up a care plan early in the dementia stage. They have the right to choose their needs, wants, medications, care, etc. However, individuals shall know that it may worsen giving them the option to have someone else decide for them. That being said, a family, friend, other person may take full responsibility for their further decisions. The individual is given option to advance directive, and a written will where they are to state what they decide upon in their later stages of dementia. Many times dementia individuals are put into a healthcare facility for a safe, warm environment. Dementia can cause wandering, or full time care with daily activities. The struggle is determining how to fulfill their needs, and provide comfort and support for their well-being.

Upon reading an interview, Featherstone told the Observer: “People with dementia on wards generally have early to mid-stage dementia. But part of the problem is that when they are admitted to an acute ward, staff see them as having late-stage dementia, so assume they can’t eat, drink, stand, walk or go to the bathroom independently, even though they still can, and don’t let them keep doing these things. Staff see them as being quite helpless, even though they aren’t.

“When staff react like that, that breeds resentment and high levels of anxiety and resistance to care, for example patients refusing to take their medication, and triggers unhappiness. It’s very isolating and scary for people with dementia to be in hospital. They are a difficult population to handle, and very needy, and I think there’s a strong sense that staff resent them being there,” she said. (Campbell, D.)

References

Campbell, D. (2018, April 21). Dementia patients restrained with controversial techniques – report. Retrieved from https://www.theguardian.com/society/2018/apr/21/dementia-patients-dehumanised-hospital-restraint-techniques

Goldstein, Felicia C., Duerr, Heidi Anne. (2017, July 6). Controversy continues regarding PPI use and dementia. Retrieved from https://www.neurologytimes.com/alzheimer-disease/controversy-continues-regarding-ppi-use-and-dementia

Aleccia, J. (2018, May 17). Dementia Patient At Center of Spoon-Feeding Controversy Dies. Retrieved from https://khn.org/news/dementia-patient-at-center-of-spoon-feeding-controversy-dies/

Yang, M., Chang, C. H., Carmichael, D., Oh, E. S., & Bynum, J. P. (2016). Who Is Providing the Predominant Care for Older Adults With Dementia? Journal of the American Medical Directors Association, 17(9), 802–806. doi:10.1016/j.jamda.2016.04.026

George, N. R., & Steffen, A. M. (2014). Medication Issues in Informal Dementia Caregivers and Care Recipients. Clinical Gerontologist, 37(3), 272–285. https://doi.org/10.1080/07317115.2014.885916

Bourgeois, M. S., & Hickey, E. M. (2009). Dementia: From diagnosis to management: A functional approach. New York: Psychology Press.

Sah, P. (n.d.). The Brain: Dementia. Retrieved from https://qbi.uq.edu.au/dementia

Improving Healthcare for People Living with Dementia. (2018, September 12). Retrieved from https://www.asaging.org/web-seminars/improving-healthcare-people-living-dementia

Span, P. (2018, January 19). One Day Your Mind May Fade. At Least You’ll Have a Plan. Retrieved from https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

Menzel, P. T., & Chandler‐Cramer, M. C. (2014, May 12). Advance Directives, Dementia, and Withholding Food and Water by Mouth. Retrieved from https://onlinelibrary.wiley.com/doi/abs/10.1002/hast.313

Mitchell, M. (2011, December 2). An analysis of common arguments against Advance Directives – Marilyn Mitchell, 2012. Retrieved from https://journals.sagepub.com/doi/abs/10.1177/0969733011416398?journalCode=neja