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1.
Palliat Med ; 36(6): 976-985, 2022 06.
Article in English | MEDLINE | ID: mdl-35466787

ABSTRACT

BACKGROUND: More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. AIM: To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. RESULTS: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. CONCLUSIONS: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.


Subject(s)
Dementia , Home Care Services , Caregivers , Death , Humans , Qualitative Research , Social Support
2.
Curr Opin Support Palliat Care ; 15(1): 11-15, 2021 03 01.
Article in English | MEDLINE | ID: mdl-33427763

ABSTRACT

PURPOSE OF REVIEW: Cognitive impairment is increasing in an ageing population and as people live longer, they are more likely to develop cancer therefore cognitive impairment and cancer are frequently co-occurring. We reviewed articles published since 2018 on cognitive impairment and cancer. RECENT FINDINGS: The current review has focused on diagnosis, treatment and palliative and end of life care. A comprehensive systematic review reported joint cancer and cognitive impairment prevalence from 0.2 to 45.6%. The review reported there was reduced likelihood of patients with co-occurring cognitive and cancer receiving information regarding cancer stage, reduced cancer treatment with curative intent and limited pain and symptom management. Further studies emphasized the role of family carers in supporting patients with cognitive impairment through cancer treatment. SUMMARY: Disappointingly in an area where the numbers of patients with cognitive impairment and cancer are increasing, there appears to be little recently published research in this area. We conclude that further research is required to determine how best to support patients with cognitive impairment and cancer and families during diagnosis of cancer, treatment and continuing care and most importantly the findings of all studies are implemented within clinical practice.


Subject(s)
Cognitive Dysfunction , Neoplasms , Terminal Care , Aged , Caregivers , Cognitive Dysfunction/epidemiology , Cognitive Dysfunction/etiology , Humans , Neoplasms/complications , Neoplasms/epidemiology , Palliative Care
4.
Curr Opin Support Palliat Care ; 11(4): 328-333, 2017 Dec.
Article in English | MEDLINE | ID: mdl-28901973

ABSTRACT

PURPOSE OF REVIEW: Dementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care. RECENT FINDINGS: The present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important. SUMMARY: There are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.


Subject(s)
Dementia/therapy , Palliative Care/organization & administration , Terminal Care/organization & administration , Advance Care Planning/organization & administration , Humans
5.
Article in English | MEDLINE | ID: mdl-24817908

ABSTRACT

BACKGROUND: This survey provides data on the Mental Health System in Ghana for the year 2011. It supplies essential planning information for the implementation of Ghana's new Mental Health Act 846 of 2012, a renewal of the Ghana 5 year plan for mental health and it contributes to international knowledge base on mental health. It provides a baseline from which to measure future progress in Ghana and comparison data for use in other countries. In addition to reporting our findings we describe and analyse deficiencies and strengths of the Ghana mental health system. METHODS: We used the World Health Organization's Assessment Instrument for Mental Health Systems (WHO-AIMS) to collect, analyse, and report data on the mental health system and services for all districts of the ten regions of Ghana. Data was collected in 2012, based on the year 2011. RESULTS: In 2011, Ghana was a lower middle income country with a population of approximately 25 million. A mental health policy, plan and legislation were in place. Mental health legislation was outdated and no longer in line with best practice standards. Services were significantly underfunded with only 1.4% of the health expenditure going to mental health, and spending very much skewed towards urban areas. There were 123 mental health outpatient facilities, 3 psychiatric hospitals, 7 community based psychiatric inpatient units, 4 community residential facilities and 1 day treatment centre, which is well below what would be expected for Ghana's economic status. The majority of patients were treated in outpatient facilities and psychiatric hospitals and most of the inpatient beds were provided by the latter. There were an estimated 2.4 million people with mental health problems of which 67,780 (ie 2.8%) received treatment in 2011. The were 18 psychiatrists, 1,068 Registered Mental Nurses, 19 psychologists, 72 Community Mental Health Officers and 21 social workers working in mental health which is unbalanced with an unbalanced emphasis on nurses compared to what would be expected. CONCLUSIONS: The main strength of the mental health system was the presence of a long established service with staff working across the country in outpatients departments and hospitals. The main weakness was that government spending on mental health was very low and the bulk of services, albeit very sparse, were centred around the capital city leaving much of the rest of the country with almost no provision. Service provision was dominated by nurses with few other professions groups present.

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