The Role of Palliative Care in Advanced Dementia

A healthcare professional's hand gently holding an elderly patient's hand, symbolizing Palliative Care in Advanced Dementia.

Dementia is a life-limiting condition that affects people in their later years. It impairs one or more cognitive domains and is progressive. Affected people suffer different levels of impairment, depending on the stage of the disease.

Whether an individual progresses to the next stage and how fast they progress is influenced by various factors. In advanced dementia, also known as late-stage dementia or severe dementia, the level of impairment in people’s cognitive domains is so severe that they are unable to perform the vast majority of daily living activities, in most cases confined to bed rest. In such situations, such people require care and monitoring around the clock and face higher risks for numerous other opportunistic ailments. In this situation, institutional care is often the best option because of the difficulties of providing care for such terminally ill patients at home.

Palliative care can play a pivotal role for people with advanced dementia. It emphasizes holistic care that addresses physical, emotional, and social needs.

Palliative Care Institute

Palliative care originated in the 1970s with a focus on care for people with late-stage cancer. However, it has developed into a discipline with a vast application over the years. Palliative care involves specialized and multidisciplinary care for people with significant and terminal illnesses, including dementia. It focuses on improving the quality of care and life for the sick and their families.

The team often provides palliative care to a patient, utilizing a whole-person approach and a comprehensive evaluation of various health issues affecting the individual. Such a team typically comprises doctors, nurses, therapists, chaplains, and social workers, among others. Their goal is to provide maximum care and relief to the sick and their loved ones. It is possible for persons with dementia to receive palliative care at any stage of their illness and not just in the advanced stages of dementia. The role of palliative care in advanced care is thus valuable and multi-dimensional.

doctors nurses therapists chaplains and social workers for palliative care

Medical recommendations suggest families and persons with dementia weigh involving palliative care in the earliest stages of dementia for their loved ones. Early involvement ensures the team gets a deep understanding of the family and the specific patient conditions and plans carefully for the form and nature of care for the later stages of dementia. Researchers note that once the individual is totally impaired, care may become reactive, focused on comfort, and delegated decision-making, where a proxy makes decisions on behalf of the indisposed.

Involving a palliative care team would ensure early planning and the involvement of the dementia patient in many critical decisions. Such may include electing the proxy decision maker and developing care plans in line with the goals and preferences of the sick individual. Doing this ensures healthcare in advanced dementia aligns with the preferences of the sick as much as possible. Such planning also avoids the abrupt introduction of issues related to palliative care when the patient is already in significant pain and discomfort during their advanced stages of dementia.

palliative care team

The multidisciplinary team of specialists that provide palliative care is also more adept at providing care and support to the family of the dementia patient. In later stages, symptoms of the disease become severe and largely unbearable, and it is easy for family and home caregivers to become overwhelmed themselves. Such conditions may place them at risk of anxiety and other behavioral ailments themselves, requiring urgent support and treatment. At this point, the palliative care team is suitable for supporting not just the patient but also the caregiver and family to cope with the stresses of late stage dementia. The team would have the resources, knowledge, and competencies to handle the patient through most of the distressing symptoms and behavioral challenges of patients with advanced dementia that would otherwise be untenable for the family to provide to their loved ones.

Advanced dementia opens up chances of multiple opportunistic ailments that may affect the patient. These may include urinary tract infections, pneumonia, behavioral challenges, and a lack of mobility. Improving he quality of life for the patients requires prompt management of these emerging opportunistic ailments in the best possible way. However, in treating these ailments, it is possible that patients undergo overtreatment or undertreatment. The use of multiple drugs at the same time is frequent in advanced dementia, which may increase the risk of poisoning or adverse reactions. Palliative care ensures that the team of specialists caring for the patient prevents under- or over-treatment for the patient, improving their quality of life.

Palliative Care

End-of-life care is a sensitive topic and discipline that palliative care teams possess the skills, knowledge and competencies to handle on behalf of the patients and their families. Dementia is the seventh most frequent cause of death worldwide and a significant cause of morbidity and dependency for older adults. It is thus likely that advanced dementia will likely result in death, and this will often require substantial support and monitoring in the terminal stages of life. Persons with advanced dementia will require full-time monitoring in their advanced stages, yet these capabilities are more likely to be provided by palliative care specialist teams than by any family caregivers.

Conclusion 

In summary, palliative care is an indispensable element of care in advanced dementia. Advanced dementia encompasses several and overt symptoms that include chronic opportunistic infections and other diseases, limited or loss of verbal communication abilities, loss of mechanical and motion abilities. These conditions confine patients to bed rest, making continuous monitoring and support mandatory. Palliative care, often provided by a team of specialists, allows patients and their families to gain relief from some of these symptoms and gain support throughout the patient’s journey. It is vital to consider palliative care in the early stages of dementia rather than as a last resort; this allows proper planning centered around the patient’s preferences, giving more time to educate the family on the possible disease trajectory of the patient.  

Resources

Malhi, R. K., McElveen, J., Dnp, & O’Donnell, L. (2021). Palliative Care of the Patient with Dementia. Delaware Journal of Public Health, 7(4), 92–98. https://doi.org/10.32481/djph.2021.09.012

Navia, R. O., & Constantine, L. (2022). Palliative care for patients with advanced dementia. Nursing, 52(3), 19–26. https://doi.org/10.1097/01.nurse.0000820024.83629.ee

Kelley, A. S., McGarry, K., Gorges, R., & Skinner, J. S. (2015). The burden of health care costs for patients with dementia in the last 5 years of life. Annals of internal medicine, 163(10), 729–736. https://doi.org/10.7326/M15-0381

Mitchell, S. L., Teno, J. M., Kiely, D. K., Shaffer, M. L., Jones, R. N., Prigerson, H. G., Volicer, L., Givens, J. L., & Hamel, M. B. (2009). The clinical course of advanced dementia. The New England journal of medicine, 361(16), 1529–1538. https://doi.org/10.1056/NEJMoa0902234

Eisenmann, Y., Golla, H., Schmidt, H., Voltz, R., & Perrar, K. M. (2020). Palliative Care in Advanced Dementia. Frontiers in psychiatry, 11, 699. https://doi.org/10.3389/fpsyt.2020.00699

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Cherie Voise

Cherie Voise

Cherie Voise, inspired by personal experiences and driven by her role as an advocate, founded Voise Foundation to improve the lives of those with dementia. As the foundation's key content creator and blog author, she draws on her deep understanding of the disease, advocating for respect, dignity, and creative therapy avenues such as VST Music© and other programs. Cherie's heartfelt writings, fueled by empathy, resonate with readers, offering insight and stirring action. Become a part of this journey and together with Cherie, let's make a meaningful impact in the world of dementia care.