L’obiettivo della ricerca è stato quello di indagare le esperienze delle persone e delle famiglie che stanno vivendo le prime fasi della demenza all’esordio, con lo scopo di comprendere come potrebbero essere forniti aiuti specifici per sostenere le persone, con i loro particolari bisogni, proprio in questa prima e delicata fase della malattia. Considerato il suo campo di indagine e il suo oggetto, tale ricerca si è prestata particolarmente all’applicazione di una metodologia di ricerca di tipo partecipativo. La ricerca infatti ha visto coinvolti attivamente in tutto il processo di ricerca i soggetti che hanno un’esperienza di vita diretta, personale o legata al loro lavoro quotidiano, del fenomeno da studiare. Sono stati utilizzati lo strumento dell’intervista semi-strutturata e del diario per indagare il punto di vista dei caregiver familiari e degli anziani affetti da deterioramento cognitivo e/o demenza in fase iniziale. I risultati ottenuti, molteplici ed eterogenei, hanno permesso di comprendere sia i vissuti dei caregiver familiari sia dei soggetti che in prima persona affrontano la malattia. Tali risultati sono stati divisi per aree tematiche, proponendo delle mappe concettuali: sei che si focalizzano sul punto di vista dei caregiver, quattro che focalizzano l’attenzione sul vissuto degli anziani. I risultati permettono di comprendere il significato che ha il prendersi cura per il caregiver e il ricevere assistenza per l’anziano; gli atteggiamenti e le emozioni di entrambi riguardo la malattia e gli aspetti legati ad essa; il ruolo della famiglia e di altre figure significative in questa situazione; il rapporto con i servizi e le modalità con cui le famiglie affrontano questo problema. / The research aim was to investigate the experiences of people and families who are experiencing the early stages of dementia, in order to understand which specific helps could be provided to support people, with their particular needs, in this first and delicate phase of the disease. Considering its field of investigation and its object, this research has been particularly suited to the application of the participatory research methodology. The research in the entire research process has actively involved people who have a direct, personal or job-connected experience of the disease. Tools as a semi-structured interview and a diary has been used to investigate the point of view of family caregivers and their elderly relatives with cognitive impairment. The results obtained have been multiple, heterogeneous and allowed us to understand the experiences of the family caregivers and of the subjects who face the disease directly. These results have been divided by different areas and have been organized using concept maps. Six maps have been focusing on the point of view of the caregivers and four maps focusing on the experience of the elderly. The results allowed the researcher to understand different elements: what caring means for the caregivers and what to be assisted means for the elderly with cognitive impairment; the attitudes and emotions of both players about the disease; the role of the family and other significant figures in this situation; the relationship with the services and how families face this problem.

Ageing is a process that starts from the moment of conception. It is accompanied by gradual impairment of body functions rendering the elderly less active socially as well as physically as a result of organ failure and compromised immunity system, leading to physical illness that may cause pain as well as mental illness such as dementia. In the United Kingdom majority of elderly people suffers from dementia and are cared for by nurses in the nursing homes. Patients with dementia experience pain as a result of other co- morbidities such as arthritis, but may be undiagnosed and therefore under-treated due to change in their behaviour. Inability to express pain causes concern to the nurse who provides care to the patient. Although some consequences of ineffective pain management have been evaluated, the question of nurses' opinions of pain experience in patients who suffer from dementia has, according to the extensive literature search done by the researcher, not been investigated. The purpose of this study is to describe and explore nurses' opinion of pain in patients suffering from dementia. The researcher adopted a qualitative approach to capture the participants' experiences and opinions of the nurses. A non-experimental qualitative research approach which is exploratory-descriptive and contextual in nature guided the researcher to explore and describe the nurses' opinion of pain in patients who suffer from dementia. Structured interviews and focus group discussions were conducted with seven participants involved in elderly care delivery. Biographical data were analysed and presented using descriptive statistics. The program for qualitative data analysis guided the process of categorizing and coding the data. / Health Studies / M.A. (Health Studies)

Ageing is a process that starts from the moment of conception. It is accompanied by gradual impairment of body functions rendering the elderly less active socially as well as physically as a result of organ failure and compromised immunity system, leading to physical illness that may cause pain as well as mental illness such as dementia. In the United Kingdom majority of elderly people suffers from dementia and are cared for by nurses in the nursing homes. Patients with dementia experience pain as a result of other co- morbidities such as arthritis, but may be undiagnosed and therefore under-treated due to change in their behaviour. Inability to express pain causes concern to the nurse who provides care to the patient. Although some consequences of ineffective pain management have been evaluated, the question of nurses' opinions of pain experience in patients who suffer from dementia has, according to the extensive literature search done by the researcher, not been investigated. The purpose of this study is to describe and explore nurses' opinion of pain in patients suffering from dementia. The researcher adopted a qualitative approach to capture the participants' experiences and opinions of the nurses. A non-experimental qualitative research approach which is exploratory-descriptive and contextual in nature guided the researcher to explore and describe the nurses' opinion of pain in patients who suffer from dementia. Structured interviews and focus group discussions were conducted with seven participants involved in elderly care delivery. Biographical data were analysed and presented using descriptive statistics. The program for qualitative data analysis guided the process of categorizing and coding the data. / Health Studies / M.A. (Health Studies)