Annotated Bibliography and Research Proposal

Alisha Simkhada

Professor Corcoran

Writing 303

21 April 2021

Dementia Patient and Care Givers

Dementia is one of the many chronic diseases that affect geriatric populations worldwide and require specialized intensive care. World Health Organization (2019) defines dementia as a syndrome which involves the deterioration of memory, behaviors, cognitive abilities, and the ability to perform daily activities. Around 50 million people around the globe have dementia, with 10 million new cases occurring every year; out of these cases, Alzheimer’s disease is the most common cause of dementia and accounts for over 60 to 70% of cases (World Health Organization, 2019). These statistics highlight the burden and impact imposed by dementia on health care systems. {{it is same as in previous paper but first paragraph should tell us what the controversy is, in terms of how professionals differ in their opinions }}

Among the other types of dementia are Vascular dementia, Frontotemporal dementia, and Lewy body dementia (World Health Organization, 2019). The pattern in which the disease progresses vary based on the underlying pathology. However, early onset decline in declarative memory and loss of cognitive abilities is a characteristic feature of most types of dementia. Some of the risk factors, other than age, that predispose an individual to dementia are family history, race and ethnicity, poor heart health, and trauma to the brain (CDC, 2019). According to the studies done by World Health Organization (2019), it is postulated that each person with dementia is affected in different ways, and this particularly depends on the impact that the disease exerts and the personality of the affected individual. Although dementia is a progressive disease, its symptoms can be categorized into different stages. World Health Organization (2019), explains that dementia symptoms start with minor memory impairments, having trouble making decisions and losing track of time, but the affected individuals are generally able to function. However, as the dementia progresses, the individual might become forgetful and unable to perform routine activities such as daily hygiene and bathing, shopping, and forgetting the date and time of appointments. In the later stages, people with dementia may have severe difficulties in memory, may struggle to live independently, and may not recognize relatives and friends. Hence in these advanced stages, dementia patients are heavily dependent on caregivers for their needs and safety. {{ this is great information, but please try to add in a more arguable topic }}

Making the diagnosis of dementia is a little complex, as there is no investigation to label someone with the disease. Diagnosis is only established on clinical grounds, on the basis of signs and symptoms. Neuropathological diagnosis can only be made after death by necropsy. The lack of any definitive diagnostic imaging modality or laboratory tests is a major cause of delay in diagnosis. Thus, it is extremely important to notice the signs and symptoms. The concept of mild cognitive impairment arose from the fact that a careful watch needs to be kept on people with risk of developing dementia. Mild cognitive impairment (MCI) is the transitional phase between normal and dementia. MCI can include gradual deterioration of memory or any other cognitive symptom. Patients with MCI are at a higher risk of developing dementia (W M van der Flier, 2005). {{ok, now can you try to add in a source that contrasts with Flier? May be bibliography will help here and give you some clues}}

Although a good history brings to attention most of the symptoms of dementia, mental examinations also play a pivotal role in reaching the diagnosis. The examination involves conducting tests on patients and asking them questions based on standardized cognitive examination questionnaires. Some of the cognitive tests include General Practitioner Assessment of Cognition (GPCOG), Mini-Mental State Exam, Mini-Cog test and Addenbrooke's Cognitive Examination Revised (ACE-R). These tests assess the memory (short-term and long-term), concentration span, communication skills, mathematics skills, personality, and orientation of the individual to time, person and place (Ponrathi Athilingam, 2015). These examinations are not exclusively for dementia and can help to diagnose any other underlying brain pathology or mental illness, like schizophrenia, dyslexia or stroke. The score of the test helps to identify the category into which the patient falls, and thus help to reach to the diagnosis of dementia. {{ok, so are you proposing to use this test as an opposing or alternate resource for evaluation of dementia}}

Only a few patients suffer from dementia due to inherited cause, that is autosomal dominant pattern of inheritance. These include Huntington disease and cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL). Though, the rest of the causes of dementia are sporadic, genetic factors like enzyme mutations, chain defects and others can play a part in causing these. Thus, family history of dementia is very significant in patients with cognitive decline.

Though no diagnostic imaging modality is available, magnetic resonance imaging (MRI) of brain can help in categorizing the type of dementia in some conditions, like we can comment on the vessel involved in vascular dementia, or it can give an idea of the amount of cortical involvement in frontotemporal dementia. Recent studies have shown involvement of hippocampus, amygdala and peri-hippocampal region in Alzheimer Disease. Amount of hippocampal volume loss can help to tell the extent of the disease. Atrophy of specific regions of brain can also help reach to the cause of dementia. The imaging modalities, though, are not definitive for making a diagnosis, but can give an idea about the prognosis once the diagnosis is established. PET or SPECT scans can also be done to see the blood supply in the brain but are not generally done (W M van der Flier, 2005). {{ this is reading way too much like a report...need some kind of declared controversy }}

Some blood tests also need to be done in patients with dementia. These include complete blood count (CBC), Basic metabolic profile (BMP), thyroid function tests (TFT), Liver function tests (LFT), Vitamin B12 and glucose levels. These tests are not done to diagnose dementia, but to identify any comorbid conditions like diabetes mellitus, depression, hypo or hyperthyroidism. Treatment of these comorbid conditions is important. (SantaCruz, 2008) Though no significant data is available which could show that treating these conditions could reverse cognitive impairment or decline, but studies have shown that these comorbidities might contribute to the development and worsening of cognitive function.

Primary health care is the first point of contact of patients with the health care system and provides the largest proportion of care and specific treatment to the patients (Thyrian Rene and friends, 2019). {{try to be much more precise with your sources...best to cite a particular page number instead because my professor is very strict grader }} World health organization (2019) {{ please refer to a specific publication}} states that for the treatment to be successful it is necessary that early diagnosis is established, and the underlying pathology must be identified and treated. However, the most important aspect lies in augmenting physical health and treating behavioral and psychological symptoms. This is only possible if long term information and care is provided to the affected individuals.

Since it is difficult to involve the patients directly in their own care, it is important to find the right person who meets the overall needs of the patient and has the necessary skills with regard to adequate and appropriate communication. As is true for people involved in caring for people afflicted with other conditions, and especially the elderly, dementia caregivers must possess all the qualities worthy of a good caregiver. These may include being patient, respectful, and empathetic towards those effected. In the same way, the caregiver must also be reliable, observant, and practical. Additionally, it is in the best interest of the patient that personal and apprentice experience of the hospital staff be considered as valuable resources while treatment is provided. (Petty and friends, 2019).

Recent data collected through different interviews emphasizes on the essentials that need to be catered and certain attributes that caregivers or hospital staff must achieve to provide necessary treatment. This data proposes that the relationship of patients and caregivers demands sensitivity and integrity and is bound together by bonds of mutual loyalty and trust which includes consideration, patience, compassion, softness, and caring culture. It further explains that this relationship gives both an opportunity to express their inner desire, needs and problems as caregivers are responsible to perform Activities of daily life (ADL). (Rundqvist and Severunsson, 1999) {{ can you offer the precise page number }}

In recent studies, it has been proposed that providing person centered care and dementia care mapping (DCM) would greatly reduce agitation that these patients face (Ball, n.d.). It has been identified that personal caregivers should be able to address the emotional and physical needs and manage the cognitive and functional deterioration of dementia patient. Likewise, this can further be supported by the qualitative research done to investigate dementia patients and their caregivers’ opinions on communication and collaboration under Karlsson and friends (2015). It was concluded that for the care and treatment, a dyadic methodology should be used as it appears the most appropriate. This includes not only a trusting relationship between the patient and the caregiver, but also the need to adapt to requirements of both patient and caregiver.

Though an emotional relationship and understanding is very important between and the caregiver, knowing the type of dementia and comorbid conditions patient is suffering from, is equally important. It not just helps the caregiver better understand the patient but will help him know the cause of the problem and the conditions worsening it. A lot of problems can be solved if the caregiver makes sure that patient takes medicines for comorbid conditions, like diabetes, hypothyroidism and B12 deficiency on time. This significantly helps in controlling the disease process and prevents its rapid worsening. {{try to find sources to keep this as a research essay...as is, it’s very much in need of conflicting and differing sources }}

While it is important to discuss the responsibilities of caregivers and their attitude towards the patients, the challenges faced by the caregivers cannot be ignored. The conditions like dementia, which are progressive and energy consuming, impose certain responsibilities on the caregivers. This can be both physically and emotionally challenging. Caregivers of dementia patients are required to have adequate knowledge about the disease and its symptoms. This is understandably a basic requirement as the caregiver must be able to plan ahead and make decisions based on the status of the patient. Additionally, caregivers should be able to recognize any subtle changes in behavior or symptoms. This means that the caregiver needs to be able to adapt to fluctuating circumstances. Moreover, the caregivers are also tasked with providing emotional care to the patients. The caregiver should be able to allay the anxiety, stay composed and be adjust to the different moods and behaviors of their patients. In some instances, caregivers are also required to perform basic nursing tasks for which they have no actual training. Overall, these factors contribute to the increased stress and anxiety prevalent among the caregivers. In the research done by Naganathan and Kerry (2016) under “Perceived value of support for older adults coping with multi-morbidity”, it has been directed that dementia patient often rely too heavily on informal caregivers. This causes the reduction in uptake of available professional support resulting in caregiver burnout. Thus, despite the importance of caregivers, based on the studies in certain European Countries, caregivers themselves are at the risk of developing health problems arising from constant care giving to dementia patient (Karlsson and friends, 2015). {{this is little bit hard to follow...what do you mean by the risk to caregivers? }}This suggests that special attention must be paid to the importance of caregiver’s well-being. There has to be an intervention to support the caregivers emotional and physical needs.

Dementia can exert both psychosocial and physical health effects on not only the patients who suffer from dementia, but also the people tasked with providing care to them. A study by Rattinger and friends (2016) highlighted the psychosocial impact dementia exerts on individuals and families who face dementia. According to this study, dementia is one of the costliest health conditions among the geriatric population resulting in an overall estimated cost of around $215 billion. Women, the spouses of those affected, and patients and their families belonging to the lower socioeconomic groups appear to be more vulnerable to this financial burden (Pinquart & Sorenson, 2006). On the other hand, studies reveal that caregivers tasked with providing care to dementia patients report a higher incidence of mental issues such as depression and anxiety, higher levels of stress, and lower levels of self-efficacy and subjective well-being when compared with non-caregivers (Pinquart & Sorenson, 2003). As a result of the psychological burden, caregivers are more likely to experience adverse physical health outcomes, such as an increased level of stress hormones, deficiencies in their immune response, antibody mediated conditions, greater use of medication, and greater cognitive decline (Vitaliano, Echeverria, Yi et al, 2005).

When investigating the efficacy and safety of DCM in primary care, studies explain that care management is advantageous for improving care givers wellbeing and social support while simultaneously decreasing both burden and depression (Thryian et al., 2017). Often caregivers function as a messenger between health care professional and the patients which can further contribute to the existing workload. Other studies find that inter-professional and inter-organizational communication with informal caregivers prevents them from being messengers between professionals and organizations (Karlson and friends, 2015). Appreciation of family members also motivates the caregiver, and a sense of belonging is always a good emotional strength to keep up with their work.

However mentally and physically taxing it may be, caring for a dementia patient does not come without its own sets of rewards and benefits, for both the patient and the caregiver. A poll conducted by the University of Michigan Institute for Healthcare Policy and Innovation (IHPI), revealed that though 78% of the caregivers said that caregiving for patients with Alzheimer’s disease was stressful, 85% of the respondents claimed it to be a “very rewarding experience” (Gavin, 2017). The experience can be considered as rewarding due to the close bonding between the patient and their caregiver and an overall relationship of mutual trust and support. Other rewards for the caregiver may include the development of an improved problem-solving ability and the formation of new relationships and support groups.

One form of caregiving that has evolved over the years and has received particular attention is homecare. Homecare is beneficial for dementia patient as they are able to receive caregiving within their familiar surroundings. This can serve to reduce the stress and anxiety associated with living in specialized facilities and alleviate transfer trauma (the stress that a dementia patient may experience when subjected to a change in the living environments). Some caregivers, however, are struggling to keep up with the evolution of home-care perception. Different kinds of attachment method have been suggested by different studies to address patient care. However, some detachment might be necessary to reduce the emotional burden that comes along with the personal care. This detachment method might also help to keep some innovative engagement between the dementia patient and their caregiver intact.

The relationship between dementia patient and their caregivers can therefore be deemed extremely unique; owing to the sensitivities of the older population involved and the taxing experience of caring for a dementia patient. One cannot exist without the other. Understandably, there are many ups and downs in this journey for both the patient and the caregiver. The challenges or the downs that they have to deal with are the different physical and emotional issues along this journey. It can reward the patients and the caregivers through an improved bond of trust and companionship. For the rewards to be reaped and the mental fatigue to be minimized during this care, different kinds of skills, knowledge, and training are needed. Owing to the complex nature of this relationship, it can be said that further studies and research are required to determine the true nature, extent, further benefits and adverse aspects of this relationship.

ALSO YOU CAN MAKE BOLDED HEADINGS IN SOME OF THE PASSAGES

References

Ball, A. (n.d.). Unique Challenges Faced By Alzheimer's & Dementia Caregivers. https://www.caringseniorservice.com/blog/challenges-alzheimers-dementia-caregivers

CDC. (2019). Alzheimer’s disease and healthy aging. Center for Disease Control and Prevention.https://www.cdc.gov/aging/dementia/index.html#:~:text=Dementia%20is%20not%20a%20specific,a%20part%20of%20normal%20aging.

Gavin, K. (2017). Stress, Reward and a Few Surprises Found in Poll of Those Who Take Care of Loved Ones with Dementia. https://labblog.uofmhealth.org/rounds/stress-reward-and-a-few-surprises-found-poll-of-those-who-take-care-of-loved-ones-dementia

Karlsson, S., Bleijlevens, M., Roe, B., Saks, K., Martin, M., Stephan, A., Suhonen, R., Zabalegui, A., Hallberg, I., & RightTimePlaceCare Consortium, t. (2015). Dementia care in European countries, from the perspective of people with dementia and their caregivers. Journal of Advanced Nursing, 71(6), 1405–1416. https://doi.org/10.1111/jan.12581

NAGANATHAN, G., KULUSKI, K., GILL, A., JAAKKIMAINEN, L., UPSHUR, R., & WODCHIS, W. (2016). Perceived value of support for older adults coping with multi-morbidity: patient, informal care-giver and family physician perspectives. Ageing and Society, 36(9), 1891–1914. https://doi.org/10.1017/S0144686X15000768

Petty, S., Dening, T., Griffiths, A., & Coleston, D. (2019). Importance of personal and professional experience for hospital staff in person-centred dementia care: a cross-sectional interview study using freelisting in a UK hospital ward. BMJ Open, 9(4), e025655–e025655. https://doi.org/10.1136/bmjopen-2018-025655

Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and aging, 18(2), 250.

Pinquart, M., & Sörensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61(1), P33-P45.

Ponrathi Athilingam, C. V. (2015). Cognitive Screening in Persons With Chronic Diseases in Primary Care: Challenges and Recommendations for Practice. American Journal of Alzheimer’s Disease & Other Dementias, 547-558. doi:10.1177/1533317515577127

Rattinger, G., Fauth, E., Behrens, S., Sanders, C., Schwartz, S., Norton, M., Corcoran, C., Mullins, C., Lyketsos, C., & Tschanz, J. (2016). Closer caregiver and care-recipient relationships predict lower informal costs of dementia care: The Cache County Dementia Progression Study. Alzheimer’s & Dementia, 12(8), 917–924. https://doi.org/10.1016/j.jalz.2016.03.008

Rundqvist, E., & Severinsson, E. (1999). Caring relationships with patients suffering from dementia — an interview study. Journal of Advanced Nursing, 29(4), 800–807. https://doi.org/10.1046/j.1365-2648.1999.00955.x

SantaCruz, K. (2008). Laboratory Diagnosis of Dementia. LABMEDICINE, 37(6). doi:10.1309/5027TLA3D9D1JVHJ

Thyrian, J., Hertel, J., Wucherer, D., Eichler, T., Michalowsky, B., Dreier-Wolfgramm, A., Zwingmann, I., Kilimann, I., Teipel, S., & Hoffmann, W. (2017). Effectiveness and Safety of Dementia Care Management in Primary Care: A Randomized Clinical Trial. JAMA Psychiatry (Chicago, Ill.), 74(10), 996–1004. https://doi.org/10.1001/jamapsychiatry.2017.2124

Vitaliano, P. P., Echeverria, D., Yi, J., Phillips, P. E., Young, H., & Siegler, I. C. (2005). Psychophysiological mediators of caregiver stress and differential cognitive decline. Psychology and Aging, 20(3), 402.

W M van der Flier, P. S. (2005). Use of laboratory and imaging investigations in dementia. Journal of Neurology, Neurosurgery & Psychiatry, 76. doi: http://dx.doi.org/10.1136/jnnp.2005.082149

World Health Organization. (2019). ISupport For Dementia: Training and support manual for carers of people with dementia (pp. 1-10, Rep.). World Health Organization. doi:10.2307/resrep27895.6