Introduction To Dementia Care For Clinical Neuroscience

Dementia and its management

Describe about the Introduction To Dementia Care for Clinical Neuroscience.

Dementia is a chronic, progressive deterioration of the human cognitive functions, much severe than what usually occurs in normal aging. It slowly affects a person’s memory, intellect, learning, and other higher mental functions, except consciousness. On further progression of the disease, the person becomes disoriented, withdrawn, and loses control of one’s own bodily functions, eventually leading to death. Dementia might be attributed to genetic causes, even as hypothyroidism, Vitamin B12 deficiency, and infections like neuro-syphillis also are known to trigger the early onset of the disease (WHO, 2016).

Dementia usually occurs in individuals over 65 years of age, and the disease causes some of the symptoms of aging to occur prematurely. Various mechanisms related to aging and aging theories are attributed to trigger the symptoms of dementia, such as the neuronal mitochondrial damage, formation of plaques, white matter damage, altered synaptic connectivity etc. However, the natural process of aging must not be confused with accelerated aging seen in dementia due to pathological changes (Appendix). Hence, a single theory of aging cannot be proved to justify accelerated aging in dementia; the interventions must be planned addressing to all the pathological changes that occur within the brain due to the disease. (Powers, 2005)

Cognitive examination is mostly used as a diagnostic testing, along with neuro-imaging techniques. Till date, a complete cure for the disease is not found, though a lot of treatment methods are being researched upon. However, there are a few measures to improve the quality of life of individuals affected with dementia and their caregivers. Cognitive, functional, behavioural, and psychological interventions can help delay the rapid progression of the disease, making the individual’s condition manageable.

This essay discusses the different manifestations of dementia and its associated changes, its impact on the quality of life, roles and responsibilities of the caregivers, and the strategies to effectively manage the disease.

Dementia and its management

Most of the types of dementia are characterized by slowly progressing irreversible damage to the brain (Savva et al., 2009). Four major types of the disease are discussed here. (Alzheimer’s Association, 2009)

Alzheimer’s disease is accountable for nearly 50% of the individuals diagnosed with Dementia. It is usually an inherited genetic disorder, characterized by short term memory loss, disorientation, agitation, and withdrawal from society. Upon onset, progressive atrophy of the brain cells triggers the symptoms. Vascular Dementia is accountable for nearly 20% of the individuals diagnosed with Dementia. It is caused by vascular damage to the brain, as in a cerebrovascular accident, with the severity of the disease depending on the area of the vascular injury. Dementia with Lewy Bodies is accountable for nearly 10% of the individuals diagnosed with Dementia. It is caused by the clumping of a protein in the nerve synapses, thereby altering synaptic transmissions. The symptoms of this type, look alike to that of Parkinson’s disease, though there is a difference in the pathology. Fronto-temporal Dementia is accountable for nearly 8% to 10% of the individuals diagnosed with Dementia. It is caused by genetic mutations, and is characterized by severe alterations in the behavioural and personality patterns. Mixed Dementias are a combination of two or more disease processes from multiple types of dementia. Research is still underway on its pathology and manifestations.

Cognitive Impact

Dementia is known to take control of the individual and his family, and alter their activities of daily life greatly. Four aspects of the influence of dementia on the family, in addition to the Quality of Life are discussed below.

Cognitive Impact – In the early stage of Dementia, which is known as “mild cognitive impairment”, the changes are subtle, and occur sparingly. Forgetting a particular word, losing directions, inability in effectively managing finances leading to massive losses of money, etc are the visible symptoms of cognitive impairment, leading to frustration, violence and/or depression. (Laurin et al., 2001) Initially, though constant care might not be needed, constant reminders on various aspects of day to day life are needed to be given, along with managing the individuals changing emotions.

Functional Impact – As the condition progresses, the person might have difficulty in performing activities that have a sequence of steps, such as tying a shoelace. Initially, assistance might be needed in completing simple chores of self care, which might regress into complete dependency of the individual on the family and the caregiver. (Gure et al., 2010) The need for constant monitoring and the shouldering of additional responsibility can lead to increased stresses on the caregiver.

Behavioural Impact – The person with dementia often turns violent, as a futile aggressive attempt to jog his memory. Emotional disturbances like frustration, depression and violence make the person feel safe when alone and isolated, thus changing the individual’s persona. The changes in the person’s behaviour might be aggressive, passive, irrelevant or indifferent, leading to confusions in the family’s image of the person (Kar, 2009).

Psychological Impact – The frequent episodes of forgetfulness, disorientation, violence etc can visibly alter an individual’s relationship with his family, as in him the family sees a person whom they have not seen before, or wish to see. The family members are the caregivers experience depressions seeing their loved ones fade away slowly in front of their eyes (Alzheimer’s Research, UK, 2015).  The increased sense of responsibility, guilt, lack of a quality personal life, increasing financial burden etc can increase the psychological stress on the family and the caregiver.

Impact on Quality of Life – The well being of the family of a person with dementia depends largely on the individual’s disease condition and the rate of progression. Interventions to manage the disease, if implemented effectively, serve to improve one’s QOL by slowing down the progress of the condition. However, though under constant radar for upgradation, outcome measurements of QOL in such settings face risks of discrepancies in reliability and validity, along with responsiveness (Logsdon, McCurry, and Teri, 2007). Nevertheless, the decrease in QOL in a family of an individual with dementia cannot be denied.

Functional Impact

In addition to these, the family and caregivers experience health issues, as sleep deprivation, exhaustion, and increased workloads takes its toll on the caregiver’s physical and psychological health (Brodaty, 2009). Having an individual with dementia in the family definitely has an impact on the finances, as the individual might not be in a position to earn, and the caregiver might not have time to earn in a full time job for the family. The loss of income, added with hidden costs like increased medical expenses, increased utility costs such as transport, communication, electricity, increased cost of aiding equipment; specialized diet costs etc have a risk of causing frictions within the family (Hurd et al., 2013).

An individual with dementia will have to eventually depend on his family; and even before they realize it, it would become an added responsibility to them. In the initial stages, the dependency of the person on his family would seem to be lesser; the challenges posed vary with the stages. The family must be prepared to manage the individual and their growing responsibilities (Alzheimer’s Research, UK, 2015), which are discussed below. Reminding the individual to perform basic activities, basic details like names, phone numbers, schedules, appointments, etc., protecting the individual from injuring himself, getting lost, etc., Monitoring the individual’s day to day activities, medications, toileting activities, etc. form the responsibilities in the early stages.

Feeding the individual with healthy food, and guiding him on how to eat, chew, swallow, etc., Grooming the individual, by maintaining high standards of personal hygiene, Restraining the individual when he gets too violent, or when he heads towards unknown/dangerous situations, Handling the individual, as in supporting him when he walks, or carrying him when he is unable to mobilize form the responsibilities in the later stages.

Additionally, actively participating in the management procedures of the individual, by constantly encouraging him to perform mind stimulation exercises, physical activities, medications, and constantly keeping one updated on recent researches on the condition, taking clear decisions on treatment, finances and legal issues with an unbiased, practical and a selfless standpoint, and consulting for expert opinion when in doubt, and seeking for help whenever needed is very essential. The caretaker must also care for themselves, and keep themselves fit in order to effectively take care of the individual with dementia.

Though managing an individual with dementia is a responsibility that is unwittingly thrust upon the family, a selfless approach would help handling the issues more efficiently. If the family is kept well aware of the individual’s condition and its progression, managing the disease can be made easier and much more effective (Etters, Goodall, and Harrison, 2008).

Behavioural Impact

Dementia cannot be cured, but can be managed in order to delay the progression of its symptoms. As an add on to the individualized care provided, Person-Centered Approach in Dementia care (Brooker and Latham, 2015) comprises of Valuating the status of individual with dementia as a citizens with entitlement rights, Individualized approach to management, with a personalized protocol for every individual, Viewing the world from the perspective of a patient with dementia and providing a suitable social environment to meet their needs. Dementia must be managed implementing a holistic plan of action, involving all the stakeholders of the condition. Setting of realistic goals, and planning a stage-wise intervention is important step in the treatment procedure.

In the early stages of Dementia, ACE Inhibitors may be given to stall the cognitive impairments of the disease. Cognitive therapies such as mental stimulation exercises, behavioural, and emotional interventions are also performed to help the individual manage his symptoms. Psychological counseling and guidance is essential for maintaining the mental stability of the patient as well as the caregivers. Though many other interventions like music therapy, simulation therapy, reminiscence therapy etc are recommended, there is no strong evidence to its effective working.

There has been research on measures to prevent dementia, and delay its onset in individuals with a risk of developing the disease. Performing physical and mental activities, intake of a Vitamin-D enriched diet, and leading a healthy and socially engaging lifestyle are the widely advocated preventive measures. Genetic counseling is encouraged, to detect the risk of dementia and implement preventive strategies early in life.

Implementing a management plan using a person-centered approach can help improve quality of care, by involving the family into the treatment procedures, and involving a holistic approach to management of dementia (Health Innovation Network, 2015).

Many ethical issues crop up through the course of dementia care. The diagnosis of the disease being told to the person who cannot comprehend it, the inability of the individual to offer informed consent to any treatment/research procedure, the inability of the individual to question the transparency of any clinical trial in which he is made to participate, the incapacity of the person to rule over his final will and settlements, etc form the ethical dilemma in the initial stages. There must be no compromise on the quality of the treatment provided to the patient due to his absent decision making (Brodaty et al., 2005).

Psychological Impact

However, the later stages of Dementia present a lot of ethico-legal confusions and conflicts, causing a great deal of emotional impact to the family. This includes situations where the individual has to be put into a full-time residential care owing to inability of the caregivers to offer undivided attention; when the individual has to be administered a feeding tube, or when the person has to be taken off life support (Whitehouse, 2000). In such cases, an unbiased guidance must be given to the family and the caregivers of the patient, in order to enable them make clear decisions without guilt or ignorance.

Conclusion

Living in a family where an individual is affected by dementia is always a challenging task. It is like watching the person slowly transforming into a distant stranger. The progression of the disease is a complex process, involving various interventions in different stages of the disease. However, a clear understanding of the condition, and strategies involving realistic goal setting, can make the situation effectively manageable.

Early identification of the symptoms is necessary to take calculated measures to overcome the influence of the disease on the various aspects of life. A person-centered approach, which focuses on valuing the patient as an individual and providing a personalized plan of care is necessary, to enable achievement of the treatment goals. Leading a healthy lifestyle, with a family support can go a long way in providing efficient dementia care, and providing a satisfactory end-stage care to the individual.

After all, it is the immeasurable flow of positivity that will help the family sail smoothly through the entire period of the disease.

References

Alzheimer’s Association (2009) Aging,Memory Loss and Dementia: What’s the difference? Available at: https://www.alz.org/mnnd/documents/aging_memory_loss_and_dementia_what_is_the_difference.pdf (Accessed: 27 June 2016).

Alzheimers Research, UK (2015) ‘Dementia in the Family’. .

Brodaty, H. (2009) ‘Family caregivers of people with dementia’, Dialogues in Clinical Neuroscience, 11(2), pp. 217–228.

Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005) ‘Why caregivers of people with dementia and memory loss don’t use services’, International Journal of Geriatric Psychiatry, 20, pp. 1–10.

Brooker, D. and Latham, I. (2015) Person-Centred Dementia Care – Making Services Better with the VIPS Framework. Edited by Isabelle Latham. Second Edition edn. Jessica Kingsley Publishers.

Etters, L., Goodall, D. and Harrison, B.E. (2008) ‘Caregiver burden among dementia patient caregivers: A review of the literature’, American Academy of Nurse Practitioners, 20(8), pp. 423–428.

Gure, T.R., Kabeto, M.U., Plassman, B.L., Piette, J.D. and Langa, K.M. (2010) ‘Differences in Functional Impairment Across Subtypes of Dementia’, The Journals of Gerontology Series-A: Biological Sciences and Medical Sciences, 65A(4), pp. 434–441.

Health Innovation Network (2015) ‘What is person – centred care and why is it important?’

Hurd, M.D., Martorell, P., Delavande, A., Mullen, K.J. and Langa, K.M. (2013) ‘Monetary Costs of Dementia in the United States’, The New England Journal of Medicine, 368, pp. 1326–1334.

Kar, N. (2009) ‘Behavioral and psychological symptoms of dementia and their management’, Indian Journal of Psychiatry., 51(Suppl-1), pp. S77–S86.

Laurin, D., Verreault, R., Lindsay, J., MacPherson, K. and Rockwood, K. (2001) ‘Physical Activity and Risk of Cognitive Impairment and Dementia in Elderly Persons’, JAMA Neurology, 58(3), pp. 498–504.

Logsdon, R.G., McCurry, S.M. and Teri, L. (2007) ‘Evidence-Based Interventions to Improve Quality of Life for Individuals with Dementia’, Alzheimers care today, 8(4), pp. 309–318.

Powers, R.E. (2005) ‘The Primary Care Guide to Theories of Aging and Dementia’, Bureau of Geriatric Psychiatry, 06(13).

Savva, G.M., Wharton, S.B., Ince, P.G., Forster, G., Matthews, F.E. and Brayne, C. (2009) ‘Age, Neuropathology, and Dementia’, The New England Journal of Medicine, 360, pp. 2302–2309.

Whitehouse, P.J. (2000) ‘Ethical issues in dementia’, Dialogues in Clinical Neuroscience, 2(2), pp. 162–167.

WHO (2016) Dementia. Available at: https://www.who.int/mediacentre/factsheets/fs362/en/ (Accessed: 27 June 2016).