Chronic Palliative Care: Specific Practices for Alzheimer's Disease Sufferers

Abstract

Introduction: In France, the government's plan to combat Alzheimer's disease takes into consideration mostly the beginnings of the disease; it does not deal with the sufferers’ end of life. For this pathology, the very idea of a palliative care phase and its definition are not straightforward. Method: The object of this qualitative study was to clarify this idea through a series of interviews with 44 professionals. Results: The study describes three successive phases in the disease trajectory, revealed by changes in the logic of care: the stimulation phase, the chronic palliative care phase, and the terminal palliative phase. Conclusion: Alzheimer's disease has a specific phase of chronic palliative care. It presents, for professionals, several types of problems related to communication, pain, and feeding.

Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease for population-level administrative databases: A RAND/UCLA appropriateness study

“…In Belgium, for instance, full population health insurance data are available, without restriction on age, disease or socio-demographic variables. Fourth, QIs for populations other than cancer who have similar end-of-life care needs but typically have different care and dying trajectories 36,37 are needed to adequately monitor healthcare system performance in terms of end-of-life care. QIs need to be included, for instance, for patients with Alzheimer's disease (AD) and chronic obstructive pulmonary disease (COPD).…”

The ethics of euthanasia in dementia: A qualitative content analysis of case summaries (2012–2020)

“…From the moment, the diagnosis is given one can be sure that it will never get better, only worse .” 20 In fact, in most cases hopelessness seems to be taken for granted. However, the fact that in one case (quote 64) the RTE ruled that attempts to improve the patient's situation should have been made, shows that dementia does not imply this absence by definition, and that alternatives, for example to comfort patients 32 , 33 , 34 , 35 may be explored more meticulously in the future. Also, the Royal Dutch Medical Association (KNMG) stated in their recently published “Guideline Medical Decisions at the End of Life,” that the mere fact that a person has (advanced) dementia is insufficient grounds for euthanasia and that the physician should always investigate whether there are other ways to eliminate, or alleviate, the suffering.…”

“…Although dementia is an incurable disease, several options exist to ease the suffering. [32][33][34][35] One option is admission to a nursing home. In the analyzed cases, however, this features as the most contested alternative.…”

Prevalence of Dementia in a Geriatric Palliative Care Unit

“…7 Due to these challenges, the palliative care approach to care in individuals with dementia is becoming more mainstream, and this is reflected in the recent development of guidelines and studies that seek to improve the provision of palliative care to this population. [8][9][10] Palliative care is an approach that improves the quality of life of patients and their families experiencing declining health due to life-threatening illnesses. This philosophy of care works to prevent and relieve suffering by means of early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.…”

“…7 Due to these challenges, the palliative care approach to care in individuals with dementia is becoming more mainstream, and this is reflected in the recent development of guidelines and studies that seek to improve the provision of palliative care to this population. 8 -10…”