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Welcome to the Dementia online newsfeed. Here you’ll find all the latest research, news stories, policy updates and guidelines. View our other newsfeeds for more subject-specific news.

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The state of hospice services in England 2014 to 2017

The state of hospice services in England 2014 to 2017 presents findings from the Care Quality Commission’s programme of inspections.

The CQC inspected hospice services in England between October 2014 and January 2017.

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Image source: http://www.cqc.org.uk

The results found that Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.

The inspections found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.

However, the report makes the case that there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care. Hospice services rated as outstanding were striving to overcome such inequalities and share their expertise to drive better care in other services.

Full report: The state of hospice services in England 2014 to 2017. Findings from CQC’s initial programme of comprehensive inspections of hospice services 

Dementia is still the leading cause of death in England and Wales

Dementia and Alzheimer’s disease remain the leading cause of death in England and Wales, accounting for 12.0% of all deaths registered in 2016, up from 11.6% in 2015, according to new Office of National Statistics (ONS) figures.

This increase is attributed by ONS to people living longer, due to improved lifestyles and medical advances. With people living longer and surviving other illnesses, the number of people developing dementia and Alzheimer disease is increasing.  Improved identification and diagnosis of dementia has also contributed to the increase.

Here, the Alzheimer’s Society responds to the figures showing dementia remains the leading cause of death.

Family visits in care homes

Bruce Walmsley & Lynne McCormack | Severe dementia: relational social engagement (RSE) during family visits | Aging & Mental Health Vol. 21 , Iss. 12,2017

Abstract:

Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.

Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.

Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.

Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.

Differences in aggression among people with dementia

Study shows that one-third of patients with the diagnosis Alzheimer’s disease or frontotemporal dementia were physically aggressive towards healthcare staff, other patients, relatives, animals and complete strangers. | via Science Daily

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Objective

To investigate the prevalence of physical aggression among patients with dementia of different types and to analyze potential differences in clinical traits, in terms of singular or repetitive behavior and occurrence in early or late stage of the disease. We also aimed at examining against whom the physical aggression was exerted.

Methods

We included 281 cases with a neuropathological dementia diagnosis from the brain bank at the Department of Pathology, Lund University, for this retrospective medical records review. The study covers cases with a post-mortem examination performed between 1967 and 2013.

Results

Of the 281 patients studied, 97 (35%) patients had a history of exerting physical aggression during the course of their disease. The patients with frontotemporal dementia exerted physical aggression earlier in the course of their disease than Alzheimer’s disease patients. The most frequent victims of the patients’ physical aggression were health staff and other patients. The aggression also affected family members as well as (to the demented patient) unknown people. The frequency of the physical aggression differed among the different diagnostic groups; frontotemporal dementia patients exhibiting a higher physical aggression frequency score than did Alzheimer’s disease patients.

Conclusions

The patterns of manifested physical aggression thus differ between the frontotemporal dementia and Alzheimer’s disease patient groups in this study. Knowledge about such differences may be of value in decision making in patient care.

Full reference: Madeleine Liljegren, Maria Landqvist Waldö, Elisabet Englund. Physical aggression among patients with dementia, neuropathologically confirmed post-mortem. International Journal of Geriatric Psychiatry, 2017

Not enough specialist support for people with dementia

Despite having complex needs, most of the healthcare received by people in the later stages of dementia is provided by GPs or emergency services, with little support from specialist healthcare professionals. | via Marie Curie

Researchers, from the Marie Curie Palliative Care Research Department at University College London, found that GPs were the main providers of medical care, with 96% of people with advanced dementia  seeing a GP in their last month of life. Paramedics also played a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients’ needs – nearly one in five (19%) were seen by a paramedic in the month prior to their death.

Only 1% of people with advanced dementia were seen during the follow up period of the study by a geriatrician or an older persons’ psychiatrist.

Based on the findings, the researchers say that healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia. Given that dementia is now the leading cause of death, they say there is urgent need to ensure an adequate standard of comfort and quality of life for patients.

Full story at Marie Curie

 

Enabling People with Dementia to Remain at Home: A Housing Perspective

Published to coincide with World Alzheimer’s Month this report has been produced on behalf of the Dementia and Housing Working Group, and supported by partners Homeless Link, Foundations and the Life Story Network

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Image source: Housing LIN

The report and the accompanying Executive Summary set out the key role housing providers, and in particular social housing providers, can play in supporting people living with dementia to stay independent in the home of their choice for as long as possible. Its findingse are divided into ones directly relevant to those working in the housing sector and those that provide a platform for wider application; for example, to become more dementia-friendly.

Post-diagnostic support for adults with an intellectual disability and dementia

Study finds, Post diagnostic support is essential for the general population, and within the intellectual disability field, needs to be individualized and adapted to the person’s needs as dementia progresses.

Abstract

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.

Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.

Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person’s needs as dementia progresses.

Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Full reference:  Dodd, K et al. | Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support. | Aging & Mental Health | Published online: 07 Sep 2017