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Thinking Dementia: Recent research and policy developments. 
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Issue 2 – August 2016
Welcome!
Welcome to Alzheimers NZ's second edition of Thinking Dementia on recent research and policy developments.This newsletter presents a selection of recent journal articles, media reports, NGO reports, university documents and international government reports related to dementia.

Alzheimers NZ has recently published a series of six comprehensive practical guides for people with dementia and their families in New Zealand. Download them for free from our website.

If you have any queries about Thinking Dementia or you’d like to suggest something that you have read that may interest other people, please email us on comms@alzheimers.org.nz

Happy reading!

In this issue
Feature article
Characteristics and experience of older New Zealand caregivers
This report from the Massey University’s Health, Work and Retirement Study covers older caregivers (55 – 79) for all conditions. The results have relevance to older caregivers for people with Alzheimers disease. It describes the characteristics of caregivers, the nature of care provided, support from other family, friends and agencies, the impact of caregiving, awareness of rights and policy implications.

Characteristics and experience of older New Zealand caregivers

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Human rights for people with dementia


Irish Charter for Human Rights for People with Dementia    
In April the Irish Alzheimer's Society published a charter highlighting the rights of people with dementia. This charter calls for greater participation, accountability, equality, empowerment, and legal recognition for the rights of people with dementia. (Source: Alzheimer's Society, Ireland)
Charter for Human Rights for People with Dementia

See also:
Short video of the Irish Dementia working group

Dementia: equity and rights
This publication highlights equity and rights issues for people with dementia and their carers from different groups including the oldest old, young onset, people with disabilities and ethnic minorities. It provides information, recommendations and resources to ensure that the best possible care and support to people living with dementia and their carers is expected and delivered. People with dementia are recognised centre stage as equal citizens with rights. (Source: Race Equality Foundation)
Dementia: Equity and Rights

Dementia and rights – the social model of disability  
This paper describes the social model of disability in relation to dementia. It describes tools that can be used to apply the model through policy, practice, service and community development. It compares the social model with the medical model which sees dementia as the problem of the individual, not the way that society responds to their rights and needs. (Source: Mental Health Foundation, UK)
Dementia and rights: key points

See also:
Dementia and rights: full report

DEEP Language Advice
The language we use to talk about dementia influences how people with dementia are viewed and also how they feel about themselves. People with dementia prefer words and descriptions that are accurate, balanced and respectful. These recommendations are written by 20 people with dementia who came together for a day in Liverpool to discuss the words that are used about dementia.
Dementia Words Matter - DEEP

See also:
The Power of Language by Kate Swaffer

Citizenship and self-determination for people living with dementia in Sweden
In Sweden people with dementia cannot be declared incompetent to make decisions about social care.  Their right to self-determination cannot be taken away. The article explores how this affects different institutional groups in decisions about guardianship, supported decision making and self-determination and outlines the implications for people with dementia. (Source: Dementia, executive summary only online)
Dementia and self-determination in Sweden

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Case management for dementia
Many countries have implemented some form of case management for people with dementia and their families. These people are known by a variety of titles including Dementia Advisors, Key Workers, Navigators and Case Managers.

Evaluating Health advisers in England
The UK government established 40 trial sites for Dementia Advisers and Peer Support Networks as part of the English National Dementia Strategy. An evaluation of the role and value of Dementia Advisers found that they provided access to a wide range of services that enabled people to remain independent for longer. Advisers had a focus on building social networks and sharing information and enhanced people’s control of their lives and their dementia. (Source: UK Department of Health) 
Evaluation of Health Advisors and peer support networks in the UK (Brief report)

See also:
Full report on the evaluation (367 pages)

The role of dementia advisers
This report outlines the provision of services provided by dementia advisers. The role of dementia advisers included providing a single point of information and access to services from time of diagnosis.  Two thirds run education groups and provide dementia friends training. (Source: Age UK on behalf of the UK Department of Health) 
The role of dementia advisers

The effectiveness of support workers
This review identifies essential components of the role and how it can be utilised to assist people with dementia and their carers. They found that holistic, tailored models of support which identified the components of support were most valuable. Features included having an intervention of at least 6-12 month, a multidisciplinary team and providing individualised education based on needs. (Source: BMC Health Services Research)
The effectiveness of support workers

Cochrane review of the effectiveness of case management
The review tried to determine whether case management was more effective than usual methods of care in improving outcomes for people with dementia living in the community. It found some evidence that case management increases the use of community services. There was not enough evidence to clearly assess whether case management could increase the length of time until people with dementia were admitted to residential care. (Source: Cochrane Review)
Summary of Cochrane review of case management 

See also:
Full Cochrane report
 
Informal caregivers’ views of case management in the Netherlands   
The Netherlands has a number of models of case management. Informal carers were surveyed about their views of the service. The services may be available from as early as when first symptoms appear to after formal diagnosis.  A large majority said that contact with the case manager assisted their role as caregiver.  Those in models where support was available at an early stage were more satisfied than those whose support only began after a formal diagnosis. (Source: BMC Geriatrics)
Survey of dementia case management users in the Netherlands

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The experience and support needs of informal carers
Family members' experience when a person is admitted to an acute ward
This qualitative study was part funded by the Alzheimers New Zealand Charitable Trust. Families in five DHBs were interviewed about their experience when a family member with dementia was admitted to acute wards. For all the desire to support was paramount and they reported the need to be present. Most felt a need for assertive advocacy was necessary. Some reported they were more successful than others. The researchers concluded that family was a resource that was unrecognised and unsupported in the event of hospitalisation of people with dementia. (Source: Dementia: executive summary only online)
“And so I took up residence”: Families' experience of hospitalisation of people with dementia

Understanding the onset of dementia in a partner     
This study seeks to understand the experience partners have as dementia sets in for their partners.  It found that this experience was more difficult and took longer than necessary  where health professionals failed to take concerns seriously or where the diagnosis was poorly delivered.  Although the illness challenged the relationship of the couple it continued to be important for most. (Source: Alzheimer's Scotland)
Understanding the onset of dementia in a partner

Youth caring for people with dementia 
This report explores the experience of children and young people who provide regular and ongoing care and emotional support for a person living with dementia. It addresses their characteristics, needs and experiences and the support available to them. Research suggests that young people caring for a loved one with dementia provide a range of practical, emotional and social support. Source National Children’s Bureau (UK)
Youth caring for adults with dementia

When the person with dementia no longer recognises you 
Most individuals' carers fear that when the person they care for no longer recognises them that this will end of their relationship. This article explains why it is still important to visit and how it may matter more to the person than they think. (Source: media article
The time when the person with dementia no longer recognises you
 
The experiences, needs and best services for informal carers   
This extensive literature review covers the experience of carers; the demands of caregiving on carers; the factors that protect carers from poor outcomes and the best services to support carers. This review provides evidence based information for people supporting carers. (Includes a comprehensive ten page summary) (Source: Royal Surgical Aids Society)
The experiences, needs and outcomes for carers of people with dementia

Effective self-management strategies for family caregivers 
Self-management is particularly valuable for family caregivers when there are changes in mood and behaviours or people with dementia. This study explored and described successful strategies used by families. The most commonly reported strategies were looking for distractions; getting adequate rest and discussing their feelings and experiences. (Source: BMC Geriatrics)
Self-management by family caregiving facing behaviour and mood change of relatives with dementia

Supporting carers of people with dementia  
This research published in 2013 aimed to understand the experiences of people with dementia and the challenges they face and the advice and support that they need.  It explored three critical points - experience when dementia is first diagnosed, when the carer takes on an active caring role and when the capacity of the person with dementia declines.  The report outlines the support that people felt they needed. (Source: Carers Trust)
Executive Summary

See also:
Full Report

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Developing dementia-friendly communities
Resource kit for councils creating dementia friendly communities (Australia) 
Alzheimer's Australia has released a resource kit for councils wishing to develop dementia friendly communities. Though specific to Australia there are many issues and ideas that will be of interest to New Zealand councils wishing to promote and age-friendly dementia conscious communities. (Source: Alzheimer’s Australia)
Resource kit for councils

Improving life for people with dementia living in the community   
This document describes the way that a Scottish council is developing a dementia friendly community guided by Alzheimer Scotland’s "Five Pillar Model of Post-Diagnostic Support". The council launched the co-production project called PRESENT in August 2013 working together with people with dementia. A number of initiatives are described. (Source: PRESENT project)
Improving wellbeing for people with dementia living in East Dunbartonshire (Scotland)

See also:
Full governance international report on PRESENT

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Technology for people with dementia
New Zealand thesis on co-designing technology products
This thesis was written by Rebecca Jury from Auckland with the assistance of Alzheimers Auckland. It observe that while there are new technological developments being developed for people with dementia and their carers, collaboration between designers and people with dementia is often poor. The research helped identify what people with dementia value, suggests ways that people with dementia can contribute to the design process and suggests that co-design can be an empowering and positive experience. (Source: Auckland University of Technology)
Co-designing assistive technology

Online support for people with dementia and their carers
Alzheimer’s Australia have launched a new Online Dementia Support service to provide people living with dementia and carers with 24/7 access to information and resources. The website offers counselling via email or video conference, a forum for participating in an online peer support community and 16 videos with experts and carers sharing their experiences to help others. (Source: Alzheimer’s Australia)
Online support for people with dementia

Technology charter for people living with dementia in Scotland
The charter is a call to action, calling for the delivery of health and social care to people with dementia to incorporate and promote the use of technology to help people to live healthier, safer, more active and more confident lives as valued citizens. It seeks to raise public and professional awareness of how technology can enhance lives, promote independent living and assist and complement care and support. (Source: Alzheimer's Scotland)
Technology charter for people living with dementia in Scotland 

Supporting people with dementia living in remote areas   
People with dementia who live in remote areas face additional challenges including long distances to care, difficulty accessing support and distance from family carers. This study explored the innovations used to address these problems in four countries. Many of these were technological. The most popular technology such as iPads or GPS devices addressed timekeeping, orientation, communication over distance, risk reduction and enjoyment. (Source: Dementia. The international journal of social research and practice)
Supporting people with dementia in remote areas

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The decision to enter long term care
Factors that influence experts decision to recommend long term care
Researchers surveyed 161 in dementia care from eight European countries about the factors that they felt influenced their decision that a person would be best placed in care. Experts were more likely to recommend Long Term Care (LTC) for individuals who required assistance with mobility or had multiple care needs. They appeared to give more weight to carers’ than clients’ wishes. Community-based social workers were less likely than other professional groups to favor LTC placement. The study highlights the need for models of institutionalization when planning services for people with dementia involving greater participation for clients. (Source: Journal of American Medical Directors)
Factors that influence experts’ decision to recommend long term care

How people with dementia and their families decide when to enter residential care 
This study explores the decision making process. The authors found that decisions about placement were often made at a late stage. People with dementia often resented a loss of autonomy while the decision is made while informal carers felt overwhelmed and distressed. Family consultation and input from health care professionals assisted. The authors saw a need for a healthcare professional facilitated decision-aid to ease the process. (Source: BMC Geriatrics)
How people with dementia and their families decide to enter a residential care

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Co-morbidities and dementia
Mental Health and dementia
This paper explores the complex relationship between dementia and mental health in older age. It explores the similarities and differences between the conditions, policy approaches (in the UK), and treatment options, and the social and economic costs of both conditions. It concludes that comorbidities are underdiagnosed for people with dementia and makes a series of recommendations. (Source: Mental Health Foundation)
The interface between mental health and dementia

Ensuring equal care for people with dementia who have comorbidities
This UK study shows that people with dementia are less likely to have cases of depression, diabetes or urinary tract infections diagnosed. Those that do are less likely to receive the same help to manage and treat these comorbidities. It includes a number of recommendations including modification of care plans for rest home residents; the need for health professionals to involve people with dementia, their families and caregivers in decisions; and broadening dementia awareness training to include how dementia may affect care for both short and long term conditions. (Source: International Longevity Centre)
Equal care for people with dementia with comorbidities

Dementia rarely travels alone
This report published by the All Party Parliamentary Group (APPG) on Dementia examines the difficulties by the 70% of people with dementia who live with dementia and other health conditions. They noted that the current health system was too fractured to address the issue well. It explored how the health and social care system can provide holistic, person-centred care and support for this growing body of people. (Source: UK Parliament)
Dementia rarely travels alone
 
See also:
Improving health of people with dementia and comorbidities (Source: NHS National Institute of Health Research)

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Art based care innovations for people with dementia
Clowning as a way of treating and managing dementia    
This trial explored whether specialised clowning (elder-clowning) could be helpful for people with moderate to severe behavioural and psychological symptoms of dementia in care. A pair of elder-clowns visited residents twice-weekly. They used improvisation, humour, empathy and modalities such as dancing, musical instruments and music to individualise engagements with residents. The researchers found positive results in reducing agitation and quality of life but no change for staff burden of care. (Source: Journal of American Geriatric Society)
Clowning as a way to treat dementia
 
Vocal Flourish - Singing in a choir for people with dementia
This study followed the experience of ‘Vocal Flourish’, a twenty person choir of people with dementia and their carers in York, UK. The report describes how the choir proceeds, their engagement and members’ feedback. It provides advice for other potential choirs. (7 pages) (Source: Dementia Without Walls, York, UK)
A choir for people with dementia
 
See also:
A Rotorua choir
Singing for the Brain – Alzheimers UK with video
Lost Chord Choir

Reading groups for people with dementia 
The Reader Organisation deliver shared reading groups for people living with dementia. These are triggered to promote the kind of memory that is stimulated by shared reading for people with dementia and their relatives and carers. Information was sought from the people with dementia, their relatives and staff in the residences and their relatives. The study demonstrated marked improvement in agitation levels. Staff reported an increased perception of the people with dementia. The evaluation noted that carers views of the people with dementia also improved. The report explains how reading groups are organised and the common way they operate. (Source: The Reader Organisation)
Evaluation of the reading groups

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Innovative services for people with dementia
Volunteers working in a dementia ward in rural Australian hospitals 
Rural hospitals in Australia face challenges in staffing dementia wards. One has trained volunteers to provide personal support and measured the outcomes. Key measures were a substantial reduction in length of stay for patients and an increase in use of analgesic medicines. Staff accepted this innovation well and the confidence of volunteers increased. (Source: James Cook University)
Volunteers working in a dementia ward in rural Australian hospitals
 
Using life story work with people with dementia
In this study researchers sought to understand how communicating life histories can help people with dementia. It includes advice on good practice for life studies; how carers and service providers can use the studies and the costs of life study as part of everyday care. (Source Social Policy Research Unit, University of York)
The value of life story work in dementia care 

See also:
Systematic review, full interim report and other
 
Walking for people with dementia  
This study explored the way that Dementia Adventure works with people with dementia and their carers to engage them with the natural environment and continue to be active. The aim is to get people outdoors and continuing to do the things they love. It shows that being in nature can provide great motivation for people living with dementia. The report makes a series of recommendations that could encourage greater use of natural spaces by people living with dementia and their carers. (Source: Natural England)
Walking for people with dementia and their carers 

See also:
Walking assists people at risk for dementia (Source Dementia Today blog)
Setting up walking groups for people with dementia (media article)
Dementia Adventure UK

Dogs as support for people with dementia
This ABC story reports on a new programme to place trained assistance dogs in the homes of people with dementia. Early results have been positive. The organisers believe that it could lead to people living happier at home for longer periods of time. (Australian Broadcasting Corporation
Dogs supporting people with dementia at home

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The English National Dementia Strategy
Progress of England’s National Dementia Strategy   
In 2015 Alzheimer’s Society and Deloitte sought the views of a wide range of health professionals and other experts on the progress of the 2009 National Dementia Strategy and the 2012 Prime Minister’s Dementia Challenge. The contributors felt there was an increase in public and professional awareness of dementia and good examples of care were emerging. However, there was evidence of wide variation on the quality of care and that for many people with dementia and their carers the overall standard of care remained inadequate. There was a strong belief that timely diagnosis is important. (Source: Alzheimer’s Society)
Progress of the National Dementia Strategy (England)
 
Prime Minister’s Challenge on Dementia 2020 implementation plan
The UK Prime Minister’s first Challenge on Dementia was issued in 2012. It aimed to make England the best place for people with dementia and the carers and families and to undertake research on dementia.  This document sets out how the country will continue to make progress to achieve the goals, and where the goals will be refocussed. It reviewed progress to date. 
Prime Minister’s Challenge on Dementia 2020

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New Guidelines and other resources
Australian clinical guidelines for dementia
The first Australian guidelines on clinical treatment for dementia were recently released. This plain English summary includes an outline of the recommendations.These emphasise timely diagnosis, living well with dementia and delaying functional decline, managing symptoms through training staff in how to provide person-centred care, using non-pharmacological approaches in the first instance, and training and supporting families and carers to provide care. (Source: Medical Journal of Australia)   
Plain English summary of Australian clinical guidelines for dementia

See also: 
Full guidelines

Mid-life approaches to reducing the risk of dementia  
This guide for NHS organisations and local bodies aims to provide them with a rationale for investment to reduce risk of dementia. The guide noted that dementia risk reduction would save the health and social care system money by reducing the prevalence and impact of dementia across the population; support people to live longer, healthier lives and impact on costs associated with non-communicable diseases such as heart disease or stroke. (Source: Public Health England)
Reducing mid-life risk of dementia

See also:
Mid-life approaches to reducing the risk of dementia (Source: National Institute for Health and Care Excellence, UK)
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