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Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia
Future Healthcare Journal, 2020
Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed.
Quality of Life in Patients with Dementia with Lewy Bodies
Behavioural Neurology, 2018
Dementia with Lewy bodies (DLB) is a complex, multisymptom disorder. When making decisions regarding the treatment of DLB, the patient’s quality of life (QoL) should always be the main consideration. To our knowledge, this is the first review article focusing on the QoL in DLB patients. We searched the PubMed database using the keywords “quality of life” and “dementia with Lewy bodies.” Previously, no specific instrument had been developed for assessing the QoL in DLB patients. Patients with DLB have a decreased QoL compared to patients with Alzheimer’s disease, which is reportedly caused by several factors including level of independence in instrumental activities of daily living, whether the patient is living with the caregiver, apathy, delusion, and dysautonomia. The direct effect of visual hallucination, sleep, and movement disorders on the QoL in DLB patients has not been previously studied. The role of cognitive function on the QoL is still controversial. In a randomized contr...
Age and Ageing
Background Lewy body dementia (LBD) is characterised by a complex array of symptoms. Being a family carer of someone with LBD can be challenging, and is associated with high levels of stress, depression and anxiety. Admiral Nursing services support family carers of people with dementia in the UK by providing tailored information, advice and therapeutic support. Recently, the Admiral Nurse model has been adapted to the needs of more specific populations, including the introduction of a new, specialist LBD Admiral Nurse. Objective to explore family carers’ experiences of the LBD Admiral Nurse service. Methods fourteen family carers of people with LBD were interviewed about their experiences of the LBD Admiral Nurse service. Interview transcripts were analysed using thematic analysis. Results four themes were identified: theme 1 described how participants valued the LBD Admiral Nurse’s specialist expertise, which contrasted with the lack of knowledge they encountered in other services....
Hospitalization in people with dementia with Lewy bodies: Frequency, duration, and cost implications
Alzheimer's & dementia (Amsterdam, Netherlands), 2018
Increased hospitalization is a major component of dementia impact on individuals and cost, but has rarely been studied in dementia with Lewy bodies (DLB). Our aim was to describe the risk and duration of hospital admissions in patients with DLB, and compare these to those in Alzheimer's disease (AD) and the general population. A large database of mental health and dementia care in South London was used to assemble a cohort of patients diagnosed with DLB. These were 1:4 matched with patients diagnosed with AD on age, gender, and cognitive status. Rates of hospital admissions in the year after dementia diagnosis were significantly higher in 194 patients with DLB than in 776 patients with AD (crude incidence rate ratio 1.50; 95% confidence interval: 1.28-1.75) or the catchment population (indirectly standardized hospitalization rate 1.22; 95% confidence interval: 1.06-1.39). Patients with DLB had on average almost four additional hospital days per person-year than patients with AD....
Long-Term Partnerships in Lewy Body Dementias
Geriatric Medicine and Gerontology [Working Title]
Long-term partnerships are important as they can determine happiness, influence physical and mental health and lengthen one's lifespan. However, complex neurodegenerative conditions, such as Parkinson's disease dementia (PDD) and dementia with Lewy bodies (DLB), can disrupt long-term relationships and even lead to dissolution of the partnership. The majority of studies in this field have focused on exploring the effect of PDD and DLB on care partners' outcomes but the impact of these conditions on dyadic, long term relationships is less well understood. We conducted a series of studies with people with PDD or DLB and their caregiving life partners using quantitative and qualitative methods. We demonstrated that PDD and DLB has a tremendous impact on the caregiving life partners and reduces relationship satisfaction. We argue for more studies in this field and recommend that future research focuses on strengthening dyadic relationships, which can ultimately preserve relationships and delay institutionalisation of the person with PDD and DLB, which has cost saving implications.
Lewy Body Dementia Association’s Industry Advisory Council: proceedings of the second annual meeting
Alzheimer's Research & Therapy, 2021
In 2019, the Lewy Body Dementia Association formed an Industry Advisory Council to bring together a collaborative group of stakeholders with the goal of accelerating clinical research into Lewy body dementia treatments. At the second annual meeting of the Industry Advisory Council, held virtually on June 18, 2020, the key members presented ongoing and planned efforts toward the council’s goals. The meeting also featured a discussion about the effects of the COVID-19 pandemic on Lewy body dementia clinical research, lessons learned from that experience, and how those lessons can be applied to the design and conduct of future clinical trials. This report provides a brief summary of the meeting proceedings with a focus on efforts to improve and adapt future Lewy body dementia clinical research.
Patients with Lewy body dementia use more resources than those with Alzheimer's disease
International Journal of Geriatric Psychiatry, 2007
Objectives The purpose of this study was to compare resource use and costs in patients with dementia with Lewy bodies (DLB) and Alzheimer's disease (AD) and to assess determinants of costs of care in DLB. Method Thirty-four patients with DLB were included in a cross-sectional study. The patients were matched with respect to age, gender and Mini Mental State Examination (MMSE) score to 34 patients with AD. Both groups were examined using Resource Utilisation in Dementia (RUD Lite), MMSE and the Neuropsychiatric inventory (NPI). The DLB patients were additionally examined using the Disability Assessment for Dementia Scale (DAD). Results Costs of care in patients suffering from DLB was on average 348,000 SEK (37,500s) per year compared to 169,000 SEK (18,200s) in the AD group ( p < 0.001). Within the DLB group, care costs correlated significantly (r c ¼ 2.77, p < 0.001) with dependency in instrumental activities of daily living measured with DAD, whereas MMSE and NPI were not significantly correlated to resource use in the DLB group.
Innovation in Aging, 2019
Background and Objectives Dementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support. Little is known about the experience of caregiving in Dementia with Lewy Bodies (DLB). The present study examines differences in the caregiving experience of spouse versus adult child caregivers of individuals with DLB. Research Design and Methods In this cross-sectional analytic study of spouses (n = 255) and adult children (n = 160) caregivers of individuals with DLB, participants completed an online survey of burden, grief, depression, well-being, quality of life, and social support. Results Adult child caregivers were more likely to care for women (p < .001) and see the care recipient less often (p < .001) than spouses. Adult child caregivers reported lower quality of life (p < .001) and more caregiver burden (p < .009), but also greater social support (p < .001) than spo...
The prognosis of dementia with Lewy bodies
The Lancet. Neurology, 2017
Dementia with Lewy bodies is the second most common form of neurodegenerative dementia, yet scarce evidence is available about its prognosis and natural history, which are crucial to inform clinical practice and research. Patients with dementia with Lewy bodies might have a less favourable prognosis, with accelerated cognitive decline, shorter lifespan, and increased admission to residential care than patients with Alzheimer's disease. Health-care costs and, importantly, caregiver burden, are also reported to be higher in dementia with Lewy bodies than in Alzheimer's disease. It is probable that causative factors for this less favourable prognosis are the increased prevalence and early emergence of neuropsychiatric symptoms in patients with dementia with Lewy bodies, and the challenge of accurate diagnosis. Evidence concerning quality of life and hospital admission rates is limited, despite their clinical and economic relevance.