How Dementia Caregiver Impacts

Dementia Caregiving Has Impact on Caregiver Health

Melodie Nelson

Florida Institute of Technology

Abstract

Caregivers play a crucial role in the care of dementia patients. The caregivers experience stress which can cause health impacts to caregiver. The caregivers go through a journey with the dementia patient and need a strong support system. The best approach to dementia care is for healthcare providers to provide information to and monitor the caregiver in addition to the dementia patient, encourage the caregiver to take care of themselves and seek support, and to work as a team to provide the best care for the dementia patient.

Keywords: caregiver impacts, dementia care, caregiver issues

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Dementia Caregiving Has Impact on Caregiver Health
Dementia is a general term to describe symptoms of memory and judgment impairment that causes patients problems in their daily life.

Alzheimer’s is a disease that effects the brain and causes dementia symptoms. Dementia is the generic term that is used by healthcare professionals to describe the symptoms of memory and judgment issues that effect patients and replaces the term senile.

Dementia is a growing problem in the United States and around the world. There are currently 5.3 million people in the United States who have been diagnosed with Alzheimer’s or other dementias and this number is expected to increase by 40 percent in the next decade (Alzheimer’s Association, 2015). Dementia care is typically provided by an unpaid caregiver that is a relation or close friend until the patient is admitted to a long term care facility such as assisted living or a nursing home. Once the patient has been admitted to a facility, the caregiver still provides care for the dementia patient just in another capacity.

This paper will review studies conducted on numerous caregiving topics on dementia, caregivers, and the effects to the caregivers in an effort to identify if dementia caregiver’s health is impacted by providing care to dementia

patients.
Discussion
Identify the Impact of Caregivers on Dementia Patients and the Healthcare System
In the United States, there is no official government aid for the care of dementia. The caregivers provide a much needed service to the patient and this country. If there were no caregivers, the healthcare system would be overrun with dementia patients being placed in long term care facilities or nursing homes much earlier than they are today. With the baby boomer generation aging and people living longer, the resources needed to assist dementia patients is going to increase tremendously. The health care costs are already staggering and the numbers only get worse each year. Medicare does not cover long term care facilities and that shortfall pushes much of the burden to Medicaid and the limited nursing home beds that must take the patients when the patients do not have the assets to pay for long term care facilities and the caregivers can no longer care for the patients at home.
Identify Who the Caregivers of Dementia Patients Are
The main caregivers of dementia patients are spouses of the dementia patient followed by adult children of the dementia patient, or occasionally another close friend or family member. Edgell (2013) indicated that the family member who lives closest to the dementia patient ends up being the caregiver by default. The caregiver may feel pressured to or obligated to give care due to the social norms and their cultural background and some caregivers must accept the role because they have no other choice but to take it on. Adult children caregivers are usually still working as well as raising their own family so the demands on these caregivers is especially challenging.
Identify Caregiver Issues
As dementia progresses, the demands become greater on the caregiver. These demands tend to have an isolating effect on the caregiver as they don’t have anyone to talk to about the disease and what they are experiencing. As the time demands grow, the caregiver has to curtail time usually spent on their other relationships.
The demands can also impact the caregiver’s employment if they are still employed. There are times when the caregiver needs to leave work to take care of the dementia patient or deal with some crisis. It is important for the caregiver to sign up for the Family Medical Leave Act (FMLA) which is guaranteed by the federal government. This allows the caregiver a certain amount of time each year that the caregiver can invoke FMLA and not worry about losing their job. This is another responsibility the caregiver must contend with but is important for their continued employment.
The caregiver starts to feel the impact physically and mentally as they typically feel the stress of trying to balance all their responsibilities and to remain calm with the dementia patient even though the caregiving can be very trying. These responsibilities can develop into health issues for the caregiver due to lack of sleep, stress, and depression.
Vreugdenhil (2014) conducted a study where she analyzed data collected from interviews of 12 adult children caregivers who also had other caregiving responsibilities for their own families. The study highlighted that this generation of caregivers must balance their roles as caregivers, bread winners, and parents to their own families and since the demands on the caregiver is immense they make personal sacrifices in order to cover their areas of responsibilities the best they can and this causes a lot of stress to their life (Vreugdenhil, 2014).
Identify Caregivers Roles
Caregivers take on many roles during the caregiving process. It starts with providing assistance with tasks such as paying bills, balancing the checkbook, managing medicine, and other tasks that we all deal with everyday that the dementia patient develops issues with. It then changes to making decisions for them, such as taking away vehicles when it is no longer safe for them to drive. It then moves into making appointments for them and getting them there, buying the groceries, and ensuring they are eating. At some point the care moves into helping the patient dress and bathe. The caregivers must decide when the patient needs to move into long term care. During long term care, the caregiver ensures the patient is being properly cared for, ensures their personal needs are being met, ensures healthcare issues are addressed, and visits them. Once the patient dies, they must make all the arrangements and take care of all the legal obligations, and complete all required documentation. Caregivers try to put limits on the care they will provide but that changes based on need (Edgell, 2013).
Identify Steps of Dementia as they Relate to Caregivers
In a study conducted by Peacock, Hammond-Collins, and Forbes (2014), they identified five steps in the cycle of dementia and how each step in the cycle impacts the caregivers. The five steps are diagnosis, homecare, institutionalization, death, and grief. Each step had unique problems and impacts. Getting a diagnosis could take a long time due to denial on the part of the patient/family as well as healthcare providers giving a diagnosis. Once a diagnosis was received, the caregiver and family had to develop a plan for care. Homecare consisted of defining who would provide what care and when, and then adapt with the progression of the disease. The caregiver and patients relationship invariably changed and the caregiver had to deal with the physical, mental, personal, and social impacts and losses experienced as a caregiver. Institutionalization was a hard decision to make for the caregiver and family but typically something forced the decision such as an event or behavior change. This was one of the most difficult steps for the caregiver and patient. Institutionalization changed the role of the caregiver but did not eliminate it. The new role became more of a care manager instead of hands on caregiver. Death ended the care recipient’s journey and caregivers had mixed emotions. Even though many caregivers acknowledged they felt they had lost the person a long time ago, they still grieved the actual passing of the patient. Grief was the last part of the journey and could last for a long time, especially for the spouse caregivers because it was often accompanied by depression that could need treatment (Peacock, 2014).

Identify Impacts to Caregivers
The caregivers themselves have health care related costs that are attributed to the caregiving and stress that the caregiving role takes on them. In a study conducted by Richardson, Lee, Berg-Weger, and Grossberg (2013), they concluded that caregivers need to be evaluated by the healthcare providers as well as the dementia patient and that the caregivers are at higher risks of developing illnesses, and developing dementia themselves due to the depression, isolation, and lack of caring for themselves. Broadty and Duncan (2009) in their study referred to family caregivers as the “invisible second patients”(p. 1) and indicated how essential the caregivers are to dementia patients well-being.
The government wins when the dementia patient remains in the home instead of in long term care but there is not compensation or aid for these caregivers to allow them to fulfill this role and keep the dementia patient home longer. There are numerous problems facing caregivers, one such problem is the need for government policy to recognize the problem and work to provide assistance in order to avoid patients moving into long term care earlier. Vreugdenhil (2014).
Many caregivers must choose between caregiving and their career. They pass up promotions, educational and travel opportunities, and at times decide to cut back on their hours to balance work and home demands which puts a strain on many of them financially. If the government provided some sort of benefit to these caregivers, like the head of household exemption to allow the caregivers to keep more of their money, this might ease some of the financial burdens.
A study conducted in the UK by Quinn, Clare, Pearce & van Dijkhuizen (2008) analyzed data they collected from interviews of spouses of dementia patients at the beginning of the dementia journey and the study indicated high rates of stress on the caregivers as they adjusted to the changes and lack of information and support made it harder to adapt, trying to figure out which of the behavioral problems were a part of dementia, depression was common in accepting and adapting to the diagnosis, and most of the caregiver’s efforts went into dealing day issues.
According to Lipton and Marshall (2013), the longer caregivers are in their caregiving role, the easier it is for them to become stressed out and not even realize it. Long term caregivers adapt to the demands and their norm is stress so they can tolerate stress better but stress can impact the caregiver’s health without the caregiver being aware of the impact. Lipton and Marshall (2013) also provide a great “common sense rule: A patient will only do as well as his or her caregiver does” (p. 71).
Ory, Hoffman, III, Yee, Tennstedt, & Schulz (1999) conducted a study to examine their theory that there is a difference between the amount of and impacts that dementia caregivers face versus caregivers of non-dementia illnesses.

The results of their examination showed higher impact rates in most areas studied for dementia caregivers such as caregiving time, and negative impacts in the caregiver’s health, both mental and physical, as well as in relationships and work hardship.

Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi (2007) conducted a study that showed higher issues with the burden of caregiving and feelings of depression as well as isolation in the dementia caregivers. The study also found that behavior problems by the care recipient placed more burdens on the caregiver than the impacts of diminished mental understanding or physical abilities and usually resulted in the care recipient being placed in a long term care facility.

The demands on the caregivers relates to high levels of stress for the caregivers and impacts their lives in the following areas: caregiving time, negative impacts in the caregiver’s health (both mental and physical), as well as in relationships, and work hardship (Ory, Hoffman, Yee, Tennstedt, & Schultz,

1999).
Identify What Caregivers Need
Richardson, Lee, Berg-Weger, and Grossberg. (2013.) conducted a study on caregiving and the information they gathered and used in the study came from national surveys. The authors highlighted the fact that there is no centralized system to collect data on caregivers. I found in looking for statistics that most are found on .org sites such as the Alzheimer’s Association, the National Alliance for Caregiving (NAC), and the American Association of Retired Persons. There are statistics on Dementia and Alzheimer’s on the Centers for Disease Control and Prevention (CDC) webpage but they do not provide any government data on caregivers. In fact, the information that the CDC does provide is from organizations such as AARP and NAC.
Broadty and Duncan (2009) state that “the management of the person with dementia requires a comprehensive plan that includes a partnership between doctors, health care workers, and families” (p. 8). The authors identified the need for health care professionals to watch for, identify, and work on an intervention to help caregivers who are prone to suffer from the negative consequences of caregiving. The authors identified that information and resources are crucial support elements for the caregivers and that they need to be connected to resources available to them which can be identified by checking dementia or Alzheimer’s associations. Broadty and Duncan (2009). A process should be developed to help caregivers learn coping skills as this would be a great benefit to caregivers.
Identify Challenges to Caregiving
Caregivers of dementia patients in the early stages of the disease feel confusion and stress because they are not provided information on dementia, what the future holds, and what resources are available for dementia care. The caregiver is usually ill prepared to take on the role of caregiver and to untangle the web of dementia care that has been thrust upon them. The caregiver typically doesn’t understand at this stage what symptoms and behaviors are dementia related and how to deal with them. This uncertainty causes stress to the caregiver because they try to not get upset with the patient but at this point they usually interpret these symptoms and behaviors as the patient being difficult and not part of the disease. The caregivers need information earlier to help them understand dementia and how it progresses. Some caregivers don’t want the information initially because then they have to accept the diagnosis.
In summary, I reviewed the following topics in this paper: the impact of caregivers on dementia patients and the healthcare system, who the caregivers of dementia patients are, caregiver issues, caregivers roles, steps of dementia as they relate to caregivers, impacts to caregivers, caregivers needs, and challenges to caregiving. There have been numerous studies on the effects to caregivers of dementia patients and many of them were referenced in this paper. The conclusions of the studies referenced in this paper all agree that caregiving provided to a dementia patient has an impact on the caregiver’s health due to the demands and stress of the caregiving and that caregivers are crucial to the care of dementia patients in all settings.

References
Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures. Retrieved from http://www.alz.org/facts/overview.asp
Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/
Egdell, V. (2013). Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care. Ageing and Society, 33(5), 888-907. doi:http://dx.doi.org.portal.lib.fit.edu/10.1017/S0144686X12000311
Lipton, A., Marshall, C. (2013). The Common Sense Guide to Dementia For Clinicians and Caregivers. Springer, NY: Springer Science+Busines Media, LLC. doi:10.1007/978-1-4614-4163-2
Ory, M., Hoffman, III, R., Yee, J, Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39, 177-186. Retrieved from http://gerontologist.oxfordjournals.org.portal.lib.fit.edu/content/39/2/177.full.pdf+html
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Peacock, S., Hammond-Collins, K., & Forbes, D. (2014). The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study. BMC Nursing, 13(42). Retrieved from http://www.biomedcentral.com/content/pdf/s12912-014-0042-x.pdf
Quinn, C., Clare, L., Pearce, A. & van Dijkhuizen, M. (2008). The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis. Aging & Mental Health, 12(6), 767-778. doi:10.1080/13607860802380623
Richardson, T., Lee, S., Berg-Weger, M., Grossberg, G. (2013). Caregiver Health: Health of Caregivers of Alzheimer’s and Other Dementia Patients. Current Psychiatry Reports, 15(367). doi:10.1007/s11920-013-0367-2
Vreugdenhil, A. (2014). 'Ageing-in-place': Frontline experiences of intergenerational family carers of people with dementia. Health Sociology Review, 23, 43+. Retrieved from http://go.galegroup.com.portal.lib.fit.edu/ps/i.do?id=GALE%7CA368380528&v=2.1&u=melb26933&it=r&p=AONE&sw=w&asid=b8e21cb13d9b2cefa3c0c3615114f170