Klaus Maria Perrar

Needs of people with severe dementia at the end-of-life: a systematic review.

BACKGROUND Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life. OBJECTIVE This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives. METHODS A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories. RESULTS A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail. CONCLUSION This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision.

Palliative treatment of chronic neurologic disorders

Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patients quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinsons disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs.

Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes:

Background: People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life. Aim: To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs. Design: Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation. Setting/participants: The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia. Results: Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: “food intake,” “physical well-being,” and “physical activity and recovery.” Categories of psychosocial needs were classified as follows: “adaptation of stimuli,” “communication,” “personal attention,” “participation,” “familiarity and safety,” as well as “self-determination.” Spiritual needs addressed “religion.” The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood. Conclusion: People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice.

Will Ihr Patient wirklich sterben

„Der Patient möchte sterben ...“ Mit dieser Aussage beginnen viele Diskussionen, gerade in der aktuellen Debatte um den ärztlich assistierten Suizid, und sofort wird auch über die Gebote und Verbote seiner Umsetzung gesprochen. Als klinisch Tätige erleben wir jedoch, dass die Realität nicht so einfach ist.