The Trials of Caring for a Loved One with Alzheimer’s Disease
Not including the 72 million baby boomers in the United States who are rapidly approaching the possibility of an Alzheimer’s diagnosis, there are currently about 5 million people who are already suffering from Alzheimer’s disease (Wennberg, Dye, Streetman-Loy & Hiep, 2015). It is likely that you or your parents are considered a baby boomer; this is a large number of people that could be affected by Alzheimer’s disease either as a personal diagnosis or the diagnosis of a loved one. In 2008 it was reported that the number of people likely to be suffering the effects of Alzheimer’s by the year 2050 could reach as many as 16 million (Alzheimer’s Association, 2008). It may surprise most that Alzheimer’s disease is 5th on the list as the cause of death for people over 65 years of age, however, this number may be quite low due to how death is reported. In many cases Alzheimer’s patients have other underlying medical conditions that are ruled as the cause of death (Alzheimer’s Association, 2008). Alzheimer’s disease (AD) as defined by Ferrara, et al. (2008), author of Prevalence of stress, anxiety and depression in with Alzheimer’s caregivers, is a progressive degenerative disease, that effects the central nervous system (CNS) which affects the memory, mind, and behavioral processes, inhibiting the ability to perform normal everyday tasks and activities (p. 2). Many times, the burden of care falls to unpaid caregivers (CG), these are usually family members; siblings, spouses or adult children of the diagnosed. The lack of effective treatment and or a cure for Alzheimer’s disease greatly impacts many US citizens including the health and wellbeing of those who care for the diagnosed patient. Caring for a loved one who has AD can be health and life-altering. Having access to affordable education, support groups, and counseling are important components for combating the effects that caregivers often face, which include depression, physical health and immunological changes, as well as loss of personal and intimate relationships. When medical personnel discuss options for an Alzheimer’s patient’s family, there must be a change in how this is approached. This paper will briefly discuss what I believe to be the three most important issues facing caregivers of an Alzheimer’s disease patient; depression, physical health and lastly loss of relationships both personal and intimate, for caregivers.
Having a loved one diagnosed with Alzheimer’s disease can be very difficult, according to a study assessing caregiver burden, among the six conditions in the study, depression and emotional stress were reported at higher numbers than any other health condition (Cole et al., 2014). A personal interview with Madeline Messer who cared for her mother after an Alzheimer’s diagnosis, also put stress and sadness at the top of the list of things she herself suffered while caring for her mother (Messer, 2018). Messer also felt as if she was not given the proper information or tools to care for her mother, stress and depression were fueled by feelings of sadness and inadequacy in her abilities to properly administer the care her mother needed (Messer, 2018). In cases when the patient and family received counseling after the initial diagnosis, it was found that those caregivers wished that the resources were available for the duration of the disease (Sørensen, Waldorff & Waldemar, 2008). It is common for those in earlier stages of Alzheimer’s disease to have many moments of clarity, that in time slowly become fewer and fewer and as those moments decrease and your loved one slips away; bouts of sadness and loss could easily overcome a caregiver allowing depression to set in. According to a 2015 study, it is actually the early stages of a patient’s diagnosis that has shown to have a significant impact on the deterioration of a caregiver’s health or quality of life (Välimäki et al., 2015). The aforementioned study found that there is a relationship between a caregiver’s symptoms of depression, distress and overall health including the caregiver’s own sense of coherence when caring for an Alzheimer’s patient. This supports the stance that caregivers of Alzheimer’s disease patients are in need of more resources to lessen the burden of care especially when it comes to the caregiver’s mental health.
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As caregivers are emotionally and mentally taxed, the body begins to show signs of the stress through conditions such as hypertension, kidney disease and cardiovascular disease; real physical conditions that are severe and concerning. Caregivers are also at risk for medication use that may lead to addiction (as cited in Wennberg, Dye, Streetman-Loy & Hiep, 2015). As the American population ages, so does the following generation, this means the family caregiver is also likely at an age that will make it increasingly more difficult to care, in a physical sense, for a loved one. As Alzheimer’s progresses, the patients require help in bathing, dressing and getting around; activities such as brushing teeth or hair and tying one’s shoes have been forgotten and become something foreign (Messer, 2018). Messer stated that her mother would go through tubes and tubes of toothpaste because she used it as makeup or lotion, she had forgotten how to use things that she had in the past, used without much thought at all. The amount of time that needs to be invested in caring for an Alzheimer’s patient adds strain to the everyday tasks of the caregiver, running errands, grocery shopping and even work are greatly impacted. Feeling as if there is never enough time in the day is what could lead to medication stimulation which could result in an addiction for the caregiver (Wennberg, Dye, Streetman-Loy & Hiep, 2015). All the effects, the stress, depression, loss of time and possible addictions can also negatively affect one’s personal life.
For any family members or close friends who are not involved in the care of the Alzheimer’s patient, it is easy to offer solutions to problems or cast judgment upon the caregiver for things they think they themselves would do differently or should be done differently. There is an old saying, something about not being able to understand another until walking in their shoes and, I imagine it could fit the Alzheimer and caregiver situation perfectly. The judgment and lack of understanding could cause resentment to build towards those who offer no help other than their opinions, as well as resentment towards the loved one (Ferrara et al., 2008). Caregivers who were involved in a study published in 2008 said they felt it was of great importance to meet with others that were dealing with the same issues, the patients who were involved in the support group with other patients found it equally important to connect with others who were going through the same thing (Sørensen, Waldorff & Waldemar, 2008). If these types of support programs were available for both caregiver and patient, with each situation being uniquely evaluated, it would help determine the best type of support needed for both the diagnosed and the caregiver. When the one being cared for is a spouse, the loss of an intimate relationship can be detrimental to the caregiver’s health; feelings of resentment and depression fueled by their lack of intimacy with their loved one could greatly affect mental state. Relationships with friends begin to deteriorate as the care for a loved one takes up more time than what is available in a day, relationships with siblings or children could be strained, professional relationships can be grossly impacted. Alzheimer’s disease leads to unpredictable behavior causing emergencies both minor and major; regular emergencies make it more difficult to care for a loved one and make it difficult to continue to care for a loved one at home (Messer, 2018). According to Messer, the hardest thing she ever had to do was place her mother in a care facility, Messer wanted to continue her care at home, but was no longer physically capable of doing so. The guilt of having to place a loved one in a care facility may be the one thing that causes the most mental distress for the caregiver, especially those who are faithful to God and His word.
The Bible tells us to care for, honor and love our parents. “If anyone does not provide for his relatives, and especially his immediate family, he has denied faith and is worse than an unbeliever.” (1 Timothy 5:8, New International Version, 2004). The words of first Timothy sound incredibly harsh however, we must realize that caring for our family often requires us to ask for help. The Bible calls us to care for the weak and wounded, my interview with Mrs. Messer revealed that sometimes the greatest care is to let go and let another who is more capable take over. “The monster” as Mrs. Messer called Alzheimer’s disease, took a lot of things from her family but at the moment that she decided to place her mother in a care facility, “The monster” did not take her peace. Mrs. Messer felt that she did what was right, and that God would understand that her mother’s needs were far greater than what she herself could provide; by placing her mother in a care facility she was in fact caring for her in the most loving and Godly way possible.
Having access to affordable education, support groups, and counseling could be the difference between a caregiver facing depression and having to combat a multitude of other possible health effects such as physical health and loss of relationships and, being able to cope with and care properly for a loved one with Alzheimer’s disease. In closing, through the research cited, I have come to the conclusion that depression, physical, mental, and emotional stress have the greatest impact on caregivers. When an individual is feeling mentally, emotionally and physically overwhelmed, the quality of care given, even when it is to a loved one, is most certainly going to be diminished. The Dalai Lama, one of the most quoted and, believed by many to be one of the most highly respected individuals ever, once said, “In dealing with those who are undergoing great suffering, if you feel “burnout” setting in, if you feel demoralized and exhausted, it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective.” (Dalai Lama, date unknown). We must give caregivers an opportunity, necessary resources to care for themselves in order to care for their loved ones for a longer period of time; this time that may very well be beneficiary to the current health of both patient and caregiver. The remaining six health conditions studied, in my opinion, may have a cumulative and detrimental effect on the above mental health conditions. Additionally, the culmination of the above health conditions has an ever-expanding ripple effect that leads to the breakdown of familial relationships as well as nonfamilial relationships. There is an urgent need for resources and funding that benefit the growing number of Alzheimer’s disease patients as well as their unpaid caregivers. Välimäki et al. (2015), agrees, it is stated in the study that there is a real need for support intervention that includes psychosocial resources for both patient and caregiver that are paired with patient-focused care (p. 695).
There is a push that needs to be spearheaded for the advancements in treatment and specialized care facilities. Further research into extended support for both caregiver and patient with access to support groups and counseling are needed in order to effectively combat the many facets of Alzheimer’s disease; with no cure and little treatment available, there is no better time than now to initiate such a program. The voices of those who have cared for their loved ones would be a great place to start in developing programs that would benefit both patient and caregiver. Alzheimer’s affects an entire family; the trials are non-discriminatory and consume not only the patient but the caregiver’s family and friends.
Although this topic may not affect everyone, this is one that is something that I think about often as my own parents age. My grandmother was in her late seventies when she passed away from complications stemming from colon cancer and even though it is those complications that were ultimately her cause of death, she also suffered with dementia as did her mother as well as a few of her siblings. Currently my mother hasn’t reached her seventies, but she is getting closer with each passing year, I fear that sometime in the next decade this research paper just may be an outline to my life. The idea of awareness isn’t enough for me, I want to see real changes in the services and education available to caregiver’s and other family members who are so lovingly dedicating every spare moment of their lives to caring for a loved one who may not realize the sacrifices. Free home care, like our national freedom, isn’t really free at all; the cost of free home care is greater than many will ever know.