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Il presente elaborato si colloca entro l’area di ricerca sull’invecchiamento patologico, con particolare riferimento al paziente con diagnosi di demenza moderata e grave e al relativo caregiver; tema centrale è la qualità della vita dei due membri della diade paziente/familiare, e la necessità di diversificare e arricchire l’attività psicologica entro i contesti di ricovero a lungo termine in favore di un miglioramento del benessere della diade stessa. A tale scopo, il lavoro si articola in due studi distinti: nel primo, si propone un intervento di stimolazione musicale individualizzata diretta al paziente con diagnosi di demenza moderata o grave, nel secondo un intervento di reminiscenza che ha come target il familiare. La tesi si articola in tre sezioni: la prima è una cornice teorica di riferimento, la seconda e la terza espongono rispettivamente il primo e il secondo studio sperimentale. Il primo capitolo ha lo scopo di fornire un quadro teorico e empirico aggiornato in merito al tema dell’invecchiamento. Inizialmente viene trattata la questione della “Ageing Society” da un punto di vista globale, delineando nel corso del capitolo le caratteristiche e le criticità legate all’invecchiamento patologico e alla sua gestione entro il Sistema Sanitario Nazionale, con particolare interesse verso la realtà delle Residenze Sanitario-Assistenziali (RSA), contesto entro il quale si sono svolti i due lavori di ricerca proposti. Si tocca infine il tema dell’intervento non farmacologico diretto al paziente. In una seconda parte è descritta la prospettiva del familiare, il concetto di burden e il ruolo della relazione pregressa tra paziente e caregiver da un punto di vista teorico; segue la descrizione degli interventi non farmacologici diretti al caregiver finora proposti in letteratura, ideati allo scopo di alleviare stress legato al ruolo di cura e alle sue implicazioni. Il secondo capitolo ha lo scopo di esporre il primo studio della tesi, che si è occupato di verificare l’efficacia di un intervento di ascolto musicale individualizzato sulla qualità della vita di pazienti con diagnosi di demenza moderata o grave. Per questo motivo, si sono prima di tutto descritti i sintomi comportamentali della demenza, con particolare riferimento alla agitazione psicomotoria e al suo ruolo di indice dello stato psicologico del paziente con deficit cognitivi avanzati. Nella sezione empirica del capitolo viene descritta nei dettagli la modalità di intervento selezionata, gli obiettivi dello studio e i risultati ottenuti in base alla misurazione pre-post delle variabili di outcome selezionate e al confronto tra gruppo sperimentale e gruppo di controllo. Il terzo capitolo tratta il secondo studio del lavoro di tesi, che ha indagato l’efficacia di un intervento di reminiscenza sulla qualità della vita percepita dai familiari di pazienti con diagnosi di demenza afferenti alla RSA Monsignor Bicchierai – Istituto Auxologico Italiano di Milano. Allo scopo di motivare le ragioni della scelta di questa modalità di intervento, si sono descritte le premesse teoriche della teoria della reminiscenza e le sue potenzialità come forma di approccio al paziente anziano; l’idea dello studio è stata quella di applicare tale modalità di intervento sul caregiver, allo scopo di alleviare il burden percepito conseguente al carico pratico e emotivo che la cura della persona cara comporta. Analogamente al secondo capitolo, segue la sezione empirica dello studio, con un esteso approfondimento metodologico e la descrizione e discussione dei risultati ottenuti. Una sezione finale avrà lo scopo di proporre riflessioni e spunti clinici emersi da entrambi gli studi, entro una visione globale della presa in carico della diade paziente/caregiver. / This research thesis refers to pathological aging, with a particular focus on the patient with a diagnosis of dementia and his/her caregiver. The intended central theme is the patient and the caregiver’s quality of life, assuming them as a dyad; the work also concentrated on the need to diversify and enrich the psychological offer within the context of long-term hospitalization. To this end, it is divided into two separate studies. In the first one, we propose an individualized musical intervention directed to the patient with a diagnosis of moderate or severe dementia; in the second the effcacy of a reminiscence intervention that targets the family member is tested. The thesis consists of three separate sections: the first is a theoretical frame, the second and the third expose the first and the second experimental study respectively. The first chapter aims at providing an updated theoretical and empirical framework on the subject of aging. The problem of the "Aging Society" is firstly discussed; among the chapter the characteristics and the critical issues related to pathological aging and its management are debated. This topic requested a deepening into the features of the italian National Health System, with a particular focus on the reality of Nursing Homes (RSA), within which the two proposed research works were carried out. Finally, the topic of non-pharmacological intervention directed to the patient is treated. The second part describes the caregivers’ perspective, the concept of burden and the role of the prior relationship between patient and caregiver: in order to act on the stress related to the role of care and its implications, non-pharmacological interventions directed to the caregiver according to scientific literature are described. The second chapter objective is to display the first study, which aimed at testing the effectiveness of an individualized music listening intervention on the quality of life of patients diagnosed with moderate or severe dementia. For this reason, the behavioral symptoms of dementia (BPSD) were first described, with particular reference to agitation and its role as an index of the psychological state of the patient with advanced cognitive impairment. In the empirical section of the chapter the intervention is carefully described, together with the objectives of the study and the results obtained based on the pre-post measurement of the selected outcome variables and the comparison between the experimental group and the control group. The third chapter deals with the second study of the thesis work, which investigated the effectiveness of a reminiscence intervention on the caregivers’ perceived quality of life; they belonged to the RSA Monsignor Bicchierai - Italian Auxologic Institute of Milan. In order to support the choice of this modality of intervention, the theoretical premises and its potential use as a form of treatment for dementia patients have been described; the seminal idea of the study was to apply this kind of intervention on the caregiver, in order to relieve the burden resulting from the practical and emotional load requested. Similarly to the second chapter, the empirical section of the study follows, with an extensive methodological study together with a description of the obtained results. A final section had the purpose to think over the clinical ideas emerged from both studies, viewing the dyad patient-caregiver as a single care recipient.

Parkinson’s Disease (PD) is a common progressive neurodegenerative disorder that leads to both physical and cognitive impairment over time. Eventually, these impairments may include the loss of autonomy, and the individual may require the assistance of an informal caregiver. Informal caregivers are critical in the care of individuals with PD and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden, mental health issues, as well as poor family dynamics. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. Given the rapidly aging population of Latin America, research suggests that the prevalence of PD is likely to increase substantially. Although cultural values such as familism may encourage informal caregiving in Latin America, very little is known about either PD patient or caregiver experiences in the region and how they may differ from those in the United States and Europe. As such, the current study built upon Pearlin’s caregiving stress process model to examine how PD-related impairments, caregiver burden and mental health, and family dynamics may differ between the United States and Mexico and to examine connections among the following variables in a sample of PD caregivers from the United States and Mexico: (a) PD-related impairments (motor and non-motor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, (c) PD-related impairments and mental health through caregiver burden, and (d) family dynamics which may moderate these relations. The current study consisted of caregivers of individuals with PD (total N = 253) from the United States (N = 105) and Mexico (N = 148). A series of t-tests and mediational models were conducted to determine the connections among PD-related impairments, caregiver burden and mental health, and family dynamics. Results suggested that caregivers from the United States site experienced higher levels of caregiver burden, although there were no significant differences in caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites, although family dynamics did not moderate these mediational models as hypothesized. Despite the importance of cultural values such as familism in Latin America, family dynamics explained more variance in the model at the United States site than at the Mexico site. Exploratory analyses found that caregivers from the Mexico site more frequently reported suicidal and self-injurious thoughts but did not find a significant disparity in self-reported gender of the caregiver. Overall, the current study identified significant relations among PD-related impairments, caregiver burden and mental health, and family dynamics among caregivers of individuals with PD from the United States and Mexico. Findings from the current study highlight a number of important interventions for caregivers and families, including caregiver burden and mental health, as well as family dynamics.

BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.

BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.

Abstract Introduction: Vietnam has one of the fastest growing HIV- epidemics in the world. In Vietnam the primary caregivers are the family. Aim:  The aim was to examine caregiver burden and need of support among family members of persons living with HIV [PLHIV] in Ho Chi Minh City, and also to investigate the differences in these matters between genders. Method:  A descriptive cross-sectional study with quantitative method was used. The study was carried out at the Hospital of Tropical Diseases, Ho Chi Minh City, Vietnam where people living with HIV are treated. A convenience sample was used. Seventy one of 87 questionnaires were completed. Result: The largest groups reported “mild to moderate” (35%) and moderate to severe” (42%) caregiver burden. The caregivers felt that they should do more for their relative and a better job in caring for them. They also expressed that the financial situation added to the burden. The needs of support most requested were economic support, knowledge about caring, and mental support to cope. Concerning caregiver burden scale only one significant difference was found, male participants found it more embarrassing to have friends over than female participants. High caregiver burden was strongly associated with depression (p=0.00). Conclusion: High caregiver burden and feeling of depression was strongly associated. The caregivers of PLHIV are in need of different kinds of support to cope with their situation. Intervention including care plan should be given to caregivers to minimize risk of burden and depression and increase their quality of life. / Sammanfattning Introduktion: Vietnam har en av de snabbaste växande HIV-epidemierna i världen. De primära vårdgivarna vid sjukdom är familjemedlemmar. Syfte: Syftet med studien var att undersöka känslan av vårdgivarbelastning hos familjemedlemmar till personer som lever med HIV när de vårdar sin anhörig och vilka stödinsatser de behöver. Vidare var syftet att se om några skillnader mellan män och kvinnor föreligger. Metod: En deskriptiv tvärsnitts studie med en kvantitativ metod användes. Studien genomfördes på Hospital of Tropical Diseases i Ho Chi Minh City, Vietnam. Ett bekvämlighets urval användes. Sjuttioen av 87 enkäter var fullständigt ifyllda och användes för analys. Resultat:Den största delen av deltagarna upplevde ”mild till lindrig” (35%) och ”lindrig till svår” (42%) belastning. Familjevårdgivarna kände att de skulle vilja göra mer för sin anhörig och vårda dem på ett bättre sätt. De uttryckte också att den svåra ekonomiska situationen ökade belastningen. Stödinsatser som efterfrågades mest var ekonomiskt stöd, kunskap om hur man vårdar och mentalt stöd för att klara av situationen som vårdgivare. Gällande vårdgivarbelastning fanns en signifikant skillnad, män var mer generade än kvinnor när de hade besök av vänner. Hög vårdgivarbelastning var starkt associerad med känslan av depression (p=0.000). Slutsats: Hög vårdgivarbelastning och känslan av depression var starkt associerade. Vårdgivarna är i behov av stödinsatser av olika slag för att klara av sin situation. Åtgärder som inkluderar en omvårdnadsplan skulle kunna erbjudas till vårdgivarna för att minimera risken av vårdgivar- belastning, depression och öka deras livskvalité.

Due to its limiting effects on the independency of life, the Alzheimer's disease has a radical impact on a diseased person. Their dependency on others influences all their family members, though especially those ones, who are taking immediate part in the caregiving for their relatives. The new changes in the family caregivers' lifestyle have an extensive influence on their health and the care about the diseased itself. In this empirical study we intended to examine the presence and the intensity of a burden, an anxiety and a depression among the family caregivers, who are being provided with psychosocial and other professional help. It's a transverse survey among the 102 family caregivers caring for their relatives with diagnosed Alzheimer's disease or some other form of dementia. The caregivers were tested for the level of subjective burden by Zarit Burden Inventory (ZBI) and for the anxiety and the depression by Beck Depression Inventory (BDI II), Geriatric Depression Scale (GDS) and Beck Anxiety Inventory (BAI), the results were processed with the statistical analysis and Pearson correlation coefficient. In the study sample there were 83 % of women and 62 % of the caregivers were older than 50 years. According to our findings 86 % of people caring for less than 2 years and 89 % of people caring...

Currently, there are approximately 1.1 million caregivers who are caring for veterans who have served in the military following September 11 (9/11), 2001 (Ramchand et al., 2014). In this study, a mixed methods analysis of post 9/11 caregivers enrolled in the North Florida South Georgia Caregiver Support Program was completed with a convenience sample of 172 participants for quantitative analysis which included 16 participants for the phenomenological query. Correlations, t-tests, and ANOVAs were used to determine the associations among race, gender, age, caregiver type, diagnosis, tier level, and the presence of children in the home with caregiver burden as measured by the Zarit caregiver burden inventory (ZBI). T-tests resulted in a significantly higher ZBI with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = -2.36, p=.02. An ANOVA was conducted across caregiver role (parent, spouse, significant other and other) and the ZBI and a significant difference was found (F [3, 159] = 1.59, p < .01, with spousal caregivers having a significantly higher ZBI score (M=6.83; SD=3.10) than parental caregivers (M = 4.46; SD=2.70). The phenomenological research focused on shared lived experiences of post 9/11 caregivers of seriously injured veterans, including their experiences with the Caregiver Support Program, the impact of having children in the home, and the utilization of technology and online support with caregiving. Differences between spousal and parental caregivers were also explored. The caregivers’ shared experiences resulted in 22 major themes which included family adjustment, subjective demands, coping techniques, social support, Veterans Affairs (VA) and Department of Defense (DOD) services, self-care, intimacy, role strain, financial resources, and life course changes as the most prevalent. Caregivers and their families had a difficult time adjusting post injury, particularly with subjective demands. Caregivers relied mainly on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers tended to have more difficulty adjusting than did parental caregivers, which was also found in the quantitative study. While the Caregiver Support Program provided many services that were helpful to the caregivers, including a financial stipend, they wanted additional services which included additional financial support and services while citing issues with program implementation and staffing as major barriers. Children added complexity to the caregiving relationship and increased burden. Children displayed behavioral changes, mostly negative, but some positive such as giving both the caregiver and the veteran a sense of purpose. Lastly, technology and online support with caregiving was used more often than not with mixed feelings about the technology and its trustworthiness; with parents not utilizing these resources as much as spousal caregivers. The study concludes with implications for current and future social work practice and research, as well as the study’s strengths and limitations.