One of the most difficult things to address in life are the thoughts about one’s death. Most people avoid thinking about it but those who do, wish for a good death. A “good death” in the western culture is one where an individuals die in good relations and at peace with God and with the society they lived in. The practical application of the palliative medicine originated from the hospice movement and is rooted on scientific basis and rational methods. Palliative care stems from the idea of helping reduce the pain and physical symptoms as one nears death and also includes helping care for the patients and their family members’ needs, in order to reduce suffering and seclusion. (Pandpazi et al., 2019)
Palliative mediation is a good option when it comes to subsiding physical pain. But even though it is a fundamental practise, it is not enough as there are many other influences as well that are more difficult to detect and even more difficult to cure. Like the psychological, social, emotional, spiritual and cultural needs of a person need to be controlled and satisfied. But such matters are of a personal nature and involve people’s individualistic approach to life, their mind set, their beliefs and expectations. This branch of palliative care requires extreme caution and deliberation before a treatment plan, as this cannot be dealt with in the same manner that body pain problems are. That approach is not effective and is not ethically right either. These things need to be addressed in order to give one the chance at a good and peaceful death.
Today we look at one such sensitive issue in the field of palliative care.
Dementia is of growing concern in our country today. In 2018, in a population of 23 million, there were 436,366 Australians living with a dementia diagnosis (Dementia Australia, 2018a). Dementia Australia estimates that a number close to 600,000 people will be living with dementia in the next decade and by 2058, that number could rise to over a million (Dementia Australia, 2018a). Dementia is the second leading cause of death amongst Australians (AIHW, 2016), and the single greatest cause of disability in older age category Australians, 65 years and above (AIHW, 2012).
Dementia is not a single disease. It is an umbrella term that has more than a 100 different types of diseases under it. It is characterised by the impairment of brain functions which include language, memory, thinking abilities, cognitive abilities and perceptions (Thorogood et al., 2018). The type of symptoms varies from each person and so does its development pattern, according to the type of dementia. It is commonly observed to be gradually progressive in nature and is irreversible. What separates people with advanced dementia from other people suffering from long term diseases is characterised by their prolonged trajectory of severe disability leading to their need to be totally dependent on others for their well-being. This is due to their symptomatic inability to make decisions, severe memory loss, language impairments, increased behavioural difficulties, inability to make judgements or solve problems and requiring substantial assistance with personal care (Thorogood et al., 2018). The two major reasons why a person is admitted to a residential aged-care is because of behavioural issues and incontinence.
As the older population continues to grow in numbers owing to the increases in longevity, dementia cases have been on the rise. The Clinical approach to treating dementia faces many challenges. This includes limited resources and a lack of curative therapies. Although palliative care helps to alleviate suffering, its implementation is relatively limited due to limited societal acceptance and feasibility. According to Lee et al., 2018, there has to be severe modifications in palliative care models to improve outcomes and increase functioning for dementia patients in all stages of the disease.
In order to provide efficient palliative care to persons with dementia, we need to first fully understand the needs of dementia patients, their family or the ones who care for them and the surrounding that they are most comfortable in. Assessing the needs of persons with dementia involves adopting a person-centred approach. Talking to the family and the community, understand the person’s life before the onset on dementia is important to the future care of the individual. According to Hansen et al., 2017, one needs to fully realise the importance of not just the physical needs of a person with dementia but also their psychosocial needs. The manner in which health care providers understand the psychosocial needs of the person with dementia and their responsibility towards fulfilling those needs, can determine how the psychosocial needs are met (Hansen et al., 2017). This can help health care workers to respond to the individual needs and preferences of the person with dementia and honour their individual way of life as best possible.
The care plan is developed after assessing the needs of the person with dementia and documenting everything that their family and close community had to provide. In order to come up with the best plan for the person with dementia, the plan must be made in consultation with the person, their family, and other necessary medical practitioners. According to Resnick et al., 2018, it should revolve around the needs of the person in a 24-hour timeline and should try to minimize any triggers during the 24-hour period that might cause pain or discomfort to them. understanding the past and present of the person helps the care giver to know the person better and respond better to their triggers and how to handle them in such situations. It also helps to improve conversations and everyday moods of the person with dementia (Resnick et al., 2018).
Research suggests that there is a correlation between the emotional needs of caregivers and the subjective or objective burdens they carry through their work. Even though there is a lot of attention given to the care provided by family members to those with dementia, care givers are still more uncomfortable with psychological discomfort as opposed to illness-consciousness. Sometimes the caregivers come from various cultural backgrounds. It is vital that they are made to feel welcomed and respected in spite of their differences. A generic intervention is recommended by Richardson et al.,2019 to reduce the stress that culturally diverse care givers might feel. Care plans must also have provisions for emergency situations. Some steps to caring for carers includes:
Dementia care must be customised according to the needs of the person. The care plan should be such that it is flexible and makes room for inputs as developments take place. A suitable team must be provided in order to meet the needs of each person. For example, those that require medication everyday might require a registered nurse to be scheduled in their care plan. Care plans must also include social activities and lifestyle enhancements (Murphy et al., 2016).
Change is particularly difficult for people with dementia. It is important that all prior changes be made clear, repeatedly reminded to them, and informed to their respective families. Be it a change from a home to a care home, it must be done with consideration and importance to the wishes on the person. According to Fitzpatrick et al., 2019, They must be made comfortable before, during and after the transition process. They must be spoken to gentle and nothing must be forced upon them. All necessary health related data must have transferred with them. Systems for managing transfers must be put in place and must include the following:
The families and close ones of the people with dementia must be offered the knowledge of where to seek help and support. They can be advised about organisations and support groups. The families must be spoken to in a kind and considerate manner. In the event of a death, they must be told the procedures and helped through the process in order to feel alone.
It is paramount that those providing palliative care to persons with dementia understand the role they play in their life. This role must be upheld with dignity and honour and must never be misused for any reason. According to Richardson et al., 2019, adopting the people-centred approach demands that every decision be taken for the betterment of the life of the ones they service. The goal of the care providers must only be to enhance and make simpler the remainder of the life of those with dementia.
The health workers must always be updated with information regarding those under their care. Any changes must be documented and necessary updates should be made. According to Laver et al., 2020, Research should be made to explore how better to introduce improvements to the available models and frameworks.
As the country sees an increase in the number of persons with dementia, there is a need to increase the palliative workforce as well. In order to meet the growing demand, we need to ensure that the people working in this field are well prepared. The workforce needs to be trained in effective communication skills needed to discuss the goals and actions of care for patients with dementia and other chronic illnesses. More nurses need to be prepared to help with pain relief and symptom detection and management. Palliative care education must be a compulsory requirement for the workforce in order to enhance the quality and standard of care offered to those in need, and in turn enhance their quality of life (Ayed et al., 2015).
There are dedicated health professionals who want to improve the palliative care for people with dementia. In order for their continued dedication it is paramount that the system be provided with skill development in fields like quality improvement, support and structure. A holistic system can support each other even if it comprises of health professionals working in different contexts in dementia health and aged care systems.
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Lee, E., Hirst, J., & Huege, S. (2017). A Complex Clinical Intersection: Palliative Care in Patients with Dementia. The American Journal of Geriatric Psychiatry, 25(3), S27.
Thorogood, A., Mäki-Petäjä-Leinonen, A., Brodaty, H., Dalpé, G., Gastmans, C., Gauthier, S., ... & Bobrow, M. (2018). Consent recommendations for research and international data sharing involving persons with dementia. Alzheimer's & Dementia, 14(10), 1334-1343.
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