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Health Care Essay: Care-Planning & Decision-Making by People With Dementia


Task: Write a health care essay on the topic “Should a person living with dementia be involved in decision making regarding their healthcare?” using relevant literature.


According to World Health Organization(2018), dementia refers to loss of memory, language, decision-making and other thinking capabilities that progresses over many years, resulting interference with daily life. Dementia generally triggers the cognitive abilities that is severe enough to impair independent functionality of an individual. Capacity to make one’s own decisions is fundamental to any person. As opined by Streater, (2017, p.1589), most of the elderly people whose cognition is gradually declining can be a matter of concern for their families as they often fail to function independently. However,Donnelly,Begley& O’Brien(2019) argue thatPatients with dementia cannot be assumed incapable of making decisions, however, decision-making is progressively becoming important in healthcare planning. LAmpe,, p.570) state that legislations ensure to support people with dementia to contribute in decision-making about their health care. The argument in this report is that many people with dementia living in care homes or with their families are excluded from making decisions about their lives. The problem identified is that many of them are willing to participate in decision-making but are not given the chance whilst others do not wish to participate. The main themes to be discussed are decision-making by people with dementia in their care planning and the interventions by health care practitioners and family members to support shared decision-making.

Literature Review
Decision-making capacity in people with dementia

According to Hegde&Ellajosyula(2016, p.34), decision-making is an inevitable part of human lives, but it can be a difficult task for people with dementia. However, they cannot be presumedincompetent of making their own decisions. People with moderate dementia can decipher and obtain meanings in their lives. Sufficient evidence is required to prove that a person with dementia is unable to make their own decisions. According to the Pennington, (2018, p.779), when a person is unable to understand, remember or judge any information, they must at least be able to communicate the decision through their body language. The capacity of decision making in people with dementia can be identified from their mental condition, other underlying healthcare issues and being under the influence of drugs or alcohol. Some people can make decisions about preference related to daily care but are unable to make decisions about complex treatment preferences. Since decisions vary in complexity, it is the responsibility of care givers and family members to assess their decision-making capacity. This will allow them to understand the decision-making patterns of people with dementia. According toGivens, (2018, p.1108), older patients are in greater need of advanced care and be informed about their care planning decisions. Nevertheless, all patients with dementia must be given a chance to involve in consultations, treatments, and continuing care. People with dementia suffer from functional disorders which makes them more vulnerable to self-harm, self-neglect, and abuse. However, facilitating them with necessary education and frequently inform about their condition can reduce the chances of any unwanted occurrence. As argued by Dixon, Laing & Valentine(2020, p.223), the area of capacity has substantial overlap with the law. Patients with deficits in cognition are closely monitored by healthcare professionals to keep them aware of the complexities and implications of their judgement. Law identifies that the interests of patients with dementia must be protected so that they can live their lives with maximum independence.

Shared decision-making
According to Mariani, (2017, p.31), shared decision-making is an approach that allows patients with dementia to make decisions with their healthcare providers. Indeed, people with dementia can demand participation in their own treatment that has direct impact in their lives. As a result of this, it becomes a moral obligation of clinicians to keep their patients informed and value their decisions. Decisions are not limited to medical care but can vary from treatment decisions to end-of-life preferences, and financial matters to decisions for daily activities. Shared decision-making involves understanding the needs and priorities of patients with dementia. At times, individual needs and needs of family care givers may be ignored, and in that case the patient might not feel valued. As suggested by Bunn, (2018, p.165), a shared decision-making helps build trust between caregivers and their patients which can achieved through longer consultations, continuity of care and exploring the medical condition of the patient with dementia thoroughly. The decision-making responsibility must be shared between the caregivers, patients and their families to understand the complex needs of the patient and help them prioritize their decisions. This approach is helps reduce stress among care givers and improve cognitive actions of patients, such as enhanced satisfactory care and reduced decisional conflict.

According to Daly, Bunn& Goodman (2018), patient centered dementia care can develop a mutual understanding between the care givers and the patients. However, patient’s willingness or ability to partake in the decision-making process is a key element for care givers. Literature suggests that older people demonstrate lack of interest in making their own decisions, however, they must be encouraged to participate in the process to realize their condition and how to live their life in a better manner. Patients need knowledge and power to participate. They need confidence in their knowledge so that they do not need to seek permission before making any important decision. However, confidence may take time to develop as it will be a consequence of shared understanding and expectations. Care givers can continue to maintain healthy relationships with their patients, understand their complex needs, help them develop their cognition and work in alignment with their priorities. Therefore, a shared decision-making can be much easier for patients with dementia to manage their daily activities and feel valued of being participated in their own decision-making process.

Role of care givers and family members in decision-making
The person with dementia often fails to make complex decisions about their lives and associated issues. However, as suggested by Jayes, (2020, p.2798), it is expected from healthcare providers to do the mental capacity assessment and make decisions for people with dementia in their best interests. Care givers can either be a healthcare professional or a family member taking care of their patient. They need to decide whether the person is able to make simple decisions or not. For example, if the person can choose whether they have a stroll in the park or not or take a shower before leaving the house. If a family member acts as a care giver, he/she must be able to decide whether the person with dementia trusts their decisions or not. Since it is the responsibility of healthcare professionals to work in the best interests of their patients, they need to decide if the patients can consent to medical treatment. There are several social organizations that provide advanced clinical care support to people suffering from dementia and require the capacity to decide if their patients can take decisions about staying at home or moving to a care home.

Caregivers are not expected to experts in identifying whether their patients are able to make their decisions on their own. However, having a reasonable belief may work. Family members having close relationship with the person suffering from dementia can also have a reasonable belief as even they may fail to completely understand their needs. Granbo, (2019, p.5) opine that care givers have the responsibility to identify whether the person with dementia understands the risks of their decisions. For example, if a person wants to cook food, they must be aware of the risks such as fire or burn. Also, if a person wants to take a stroll outside, they must be able to judge the risks like remembering their way to home or the traffic. For people with mild dementia, caregivers assist them in transportation and housekeeping. Family members can provide assistance with personal care, protection, encourage them, and keep them motivated to live their lives with greater satisfaction. Family care givers also need to manage behavioral problems of people with severe dementia as they fail to judge their own actions. Therefore, whether it is a family care giver or a healthcare professional, they need to be prepared and well-informed about the patient’s condition to provide them with patient-centered care.

The issue of dementia is a challenging medical condition which can have grave impacts on people suffering from it on their daily lives. The increase in the number of patients per year has forced medical professionals to shift from psychiatry to advanced medicine facilities and care giving to support the interests of patients. Dementia care requires healthcare professionals to opt for intensive care, practical medicine and laws abiding advanced patient care. Dementia care is not easy as it takes time to understand and evaluate the needs of the people suffering from it. However, care givers should think in making decisions more about what kind of life the person suffering dementia should have rather than the duration of life they are going to live like this. Consequently, it will allow them to partner not only with their patient but with their family members also. It is important to understand that care for a needy person is a privilege that needs to be provided with respect and responsibility.

Ampe, S., Sevenants, A., Smets, T., Declercq, A., & Van Audenhove, C. (2016). Advance care planning for nursing home residents with dementia: policy vs. practice. Journal of Advanced Nursing, 72(3), 569–581.

Bunn, F., Goodman, C., Russell, B., Wilson, P., Manthorpe, J., Rait, G., ... & Durand, M. A. (2018). Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis. BMC geriatrics, 18(1), 165.

Daly, R. L., Bunn, F., & Goodman, C. (2018). Shared decision-making for people living with dementia in extended care settings: a systematic review. BMJ open, 8(6).

Dixon, J., Laing, J., & Valentine, C. (2020). A human rights approach to advocacy for people with dementia: A review of current provision in England and Wales. Dementia, 19(2), 221-236.

Donnelly, S., Begley, E., & O’Brien, M. (2019). How are people with dementia involved in care-planning and decision-making? An Irish social work perspective. Dementia, 18(7-8), 2985-3003.

Givens, J. L., Sudore, R. L., Marshall, G. A., Dufour, A. B., Kopits, I., & Mitchell, S. L. (2018). Advance care planning in community-dwelling patients with dementia. Journal of pain and symptom management, 55(4), 1105-1112.DOI:

Granbo, R., Boulton, E., Saltvedt, I., Helbostad, J. L., &Taraldsen, K. (2019). My husband is not ill; he has memory loss-caregivers perspectives on health care services for persons with dementia. BMC geriatrics, 19(1), 1-7.

Hegde, S., &Ellajosyula, R. (2016). Capacity issues and decision-making in dementia. Annals of Indian Academy of Neurology, 19(Suppl 1), S34.doi: 10.4103/0972-2327.192890

Jayes, M., Palmer, R., Enderby, P., & Sutton, A. (2020). How do health and social care professionals in England and Wales assess mental capacity? A literature review. Disability and rehabilitation, 42(19), 2797-2808.

Mariani, E., Vernooij-Dassen, M., Koopmans, R., Engels, Y., &Chattat, R. (2017). Shared decision-making in dementia care planning: barriers and facilitators in two European countries. Aging & Mental Health, 21(1), 31-39.

Pennington, C., Davey, K., terMeulen, R., Coulthard, E., & Kehoe, P. G. (2018). Tools for testing decision-making capacity in dementia. Age and Ageing, 47(6), 778-784.

Streater, A., Coleston-Shields, D. M., Yates, J., Stanyon, M., &Orrell, M. (2017). A scoping review of crisis teams managing dementia in older people. Clinical interventions in aging, 12, 1589.doi: 10.2147/CIA.S142341

World Health Organization. (2018). Towards a dementia plan: a WHO guide.


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