Thinking Dementia: Recent research and policy developments. 
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Issue 1 – June 2016
Welcome to Alzheimers NZ's first edition of Thinking Dementia on recent research and policy developments. This newsletter presents a selection of recent journal articles, university documents, media reports, NGO reports and international government reports related to dementia. The links are arranged by topic.

We are currently planning to send out Thinking Dementia four times a year. However, we will review this in future. 

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Feature article
Human Rights

Dementia Alliance International has published a new booklet The Human Rights of People Living with Dementia: from Rhetoric to Reality.

In this issue

Dementia-friendly communities

Key principles and global developments
ADI released the report Dementia Friendly Communities: Key Principles and Global Developments at its International Conference in Budapest, showcasing more than 100 dementia-friendly projects across the world. New Zealand is featured in the report with Alzheimers NZ’s work towards a dementia-friendly New Zealand.

Alzheimers Disease International (ADI): Dementia Friendly Communities: Key Principles and Global Developments
Guide to becoming a dementia-friendly community
This guide by Alzheimers Australia outlines eight key steps to establishing and maintaining a dementia-friendly community. It includes a number of examples of how this was implemented in a city with a high population of people with dementia (23 pages).

Alzheimers Australia: Guide to becoming a dementia-friendly community
See also: 
Alzheimers Australia produce a number of guides and examples of best practice for creating a dementia friendly community for communities, individuals and employers. 

Lessons for creating a dementia-friendly community
This paper summarises the findings from evaluations of the development of dementia-friendly communities in two cities in England. The key messages included that the engagement of people with dementia and their families is essential to success; the human rights of people with dementia must be recognized, awareness raising with business, organisations and the media is essential and connections and networks are at the heart of success (19 pages).

Hare P et al (2015) How can we make our cities dementia friendly? Sharing the learning from Bradford and York. 

Creating a dementia friendly workplace: a guide for employers 
Dementia in the workplace is an increasing issue. This guide for workplaces released earlier this year by Alzheimer's Society (UK) contains advice on considering premises from a dementia-friendly perspective, encouraging open dialogue and using appropriate terminology. The guide includes examples of scenarios, case studies and a section on making reasonable adjustments (26 pages).
See also:
This Rowntree Foundation document describes the way they developed a dementia friendly workplace and provides advice for other organisations (PDF).

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Perspectives of people with dementia
Developing a national movement of people with dementia
This UK report describes the first three years of the development of a national network of people with dementia. The network (DEEP) aims to engage and empower people with dementia to set priorities about dementia and shape political agenda (17 pages).
Litherland R (2015): Developing a national user movement of people with dementia: Learning from the Dementia Engagement and Empowerment Project (DEEP)
See also:
Consumer Summit in Australia
Alzheimer’s Australia hosts an annual consumers meeting. This report addresses the issues addressed at the 2015 meeting. Fifty people with dementia and their carers shared stories and discussed issues from a consumer perspective. They unanimously called for a funded National Dementia Strategy. Key components would include culturally aware dementia support; promotion of risk reduction, tackling stigma and discrimination and sustained investment in dementia research (9 pages).

Alzheimers Australia (2016) National Consumer Summer Communique
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Health services for people with dementia
Physician's views on the state of Alzheimers Disease care  
This slideshow shows the results of a survey of US physicians. It focuses on their attitudes to the current state of AD diagnosis and management (Media entry).

Hospital services for people with dementia
This report prepared by Alzheimers Society (UK) looks at the problems people affected by dementia can face on admission to hospital, the care they receive throughout their stay, the issues they can face on discharge, and falls among patients with dementia.  It includes examples of excellent and poor services (31 pages).

Boaden A (2016) Fix dementia care: hospitals.  Alzheimers Society.

Summary of research into impact of GPs quality on reducing hospital admission
The report summarises the key points of recent studies on the impact of primary health care quality on hospital admissions in England. The study found that GP services instituting a dementia review had a limited effect on hospital admission and outcomes. The authors noted other factors including a shortage of social services and patient factors such as age and presence of co-morbidities also affect outcomes (2 pages).

How pharmacists can help people with dementia
The article describes a number of ways pharmacists can help to support people in the dementia community.  These include ensuring the pharmacy environment is responsive to people with dementia and instituting comprehensive medication management services (4 pages).

Stafford A (2015)  The pharmacist’s role in supporting people with dementia in the community.  Australia Pharmacist February 2015 36-39.
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Innovative developments for people with dementia
Dementia care and the deaf 
There is strong evidence of a link between dementia and deafness. This report indicates that dementia awareness is low in the deaf community and suggests ways to address this (12 pages).

Lundy H et al (2015) Supported learning and outreach with the deaf community. Joseph Rowntree Foundation. 

Art dementia programme  
This report from the Australian Broadcasting Commission describes an programme being established for people with dementia and their carers at the city art gallery. Among the benefits of the programme is that it brings people out into the community (Media, 2 pages).

Art and Alzheimer's dementia programme being rolled out in Bundaberg

See also: Back to top

Accommodation for people with dementia

Improving housing for people with dementia  
This paper from the Australian Housing and Urban Research Institute addresses the question ‘how can we improve housing and care for people with dementia?’  Key findings included that familiar environment and housing security were important; home modifications could increase independence and quality of life and support and respite services could be improved (4 pages).

Dementia in retirement villages 
Retirement villages were not originally designed for high needs residents. However, growing numbers of people are developing dementia while living in them and the nature of retirement villages is changing. The research found that the extent that villages in New South Wales had responded varied for a number of reasons. The research also identified a need for dementia education for retirement village staff and for Government policies (32 pages).

Miskovski K et al (2015) Living with dementia in Retirement Villages. Alzheimers Australia NSW Discussion Paper 13 Dementia in retirement villages. Alzheimers Australia NSW. 
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End of life services for people with dementia
Experts views on the factors leading to good end of life care for people with dementia
A survey of experts in palliative care identified four key factors in good practice for end of life care for people with dementia. These were leadership and management of care; integration of clinical care in routine care settings; ensuring continuity of care and use of guidelines and care pathways (full text, 10 pages).

Lee et al (2015)  Expert Views on the factors enabling good end of life care for people with dementia: a qualitative study.  BMC Palliative Care (2015) 14;32.
See also:
Assisted dying and dementia
This systematic review compared the attitudes of health professionals, caregivers, the general public and two small samples of people with dementia to assisted death. Health professionals staff were least likely to support assisted dying, even in countries where it is legal, and the general public were most likely to support it (executive summary only).

Tomlinson E and Stott J (2014) Assisted dying in dementia: a systematic review of international literature on the attitudes pf health professional, patients, carers and the public and the factors associated with these. Intl J Geriatric Psychiatry 2015; 30; 10-20.

Dutch physicians and general public’s attitude to assisted dying  
The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This interview study of 51 current and retired physicians and 16 members of the general public found that physicians were reluctant to unwilling to provide assisted dying without direct communication with the patient. This suggests that use of AEDs would be limited (6 pages).

Kouwenhoven P et al (2015) BMC Medical Ethics, 16:7.
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International conferences and reports
Alzheimer's Disease International - World Alzheimer Report 2015
The report estimates the international prevalence (numbers with a condition), incidence (new cases) and costs of dementia based on systematic reviews.  Regionally prevalence varies from 3.4% in Central Europe to 8.7% in North Africa and the Middle East. The report estimates that the number of people with dementia is projected to double every 20 years reaching 131.5 million on 2050 (84 pages).

First WHO Ministerial Meeting Report
The report includes key speeches and they key issues that were discussed. These included the challenges, how to respond to them and challenge for future action. Five emergent themes were identified. These were accelerating focus on dementia risk reduction; strategic approaches for dementia research; living well with dementia; improving dementia awareness and reducing stigma and strengthening global leadership and a call for action (78 pages).

World Health Organisation (2016). First WHO ministerial conference on global action against dementia: meeting report, WHO Headquarters, Geneva,Switzerland, 16-17 March 2015.
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Future patterns of dementia

One in three could develop dementia as people live longer 
This research by the United Kingdom Office of Health Economics (commissioned by Alzheimer’s Research UK), calculated that 32% of people born in the UK (27% of males and 37% of females) in 2015 will develop the condition (12 pages). 

Lewis F (2015) Estimation of future cases of dementia from those born in 2015. Office of Health Economics. Commissioned by Alzheimer’s Research UK.  

Cohort study of 69 year olds to study lifetime risks for dementia begins
A multi-disciplinary team of researchers based at the University College London (UCL) is beginning an ongoing study of 500 volunteers from the MRC National Survey of Health and Development as they approach their 70th birthday. The project is using ultra-sophisticated brain scanning and memory and thinking tests to explore lifetime risk factors for dementia and looking for early signs of conditions like Alzheimer’s disease. 
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David Smith (Professor Emeritus at Oxford University) recently delivered a lecture funded by the Neurological Foundation at Auckland University on preventing Alzheimer's disease. The Foundation has composed an overview of Professor Smith’s lecture and made his lecture slides available. 

Cognitive training offers a potential approach for dementia prevention and maintenance of cognitive function in older adults
Researchers from King’s College have conducted a randomised control trial (RCT) of 2912 adults over 60 on the use of online cognitive training. It shows that an online brain training package can improve memory and reasoning skills and how older people carry out everyday tasks such as shopping and cooking (7 pages).
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Family/whānau as carers 
Dementia in the family

This report by explores the impact that dementia of a family member has on family members. It combines case studies and data reporting. It looks at both the difficulties and the rewards of caregiving (37 pages).

 Alzheimers Research UK (2015) Dementia in the family: the impact on family.

How caregivers’ attitudes are affected by how they understand people with dementia  
The study explores how the response to illness of families of people with long term conditions such as dementia influences their understanding of what is happening to the person and how they respond and provide support. The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Semi-structured interview of 50 caregivers informed the study (10 pages).
Quinn C et al (2016) Illness representations in caregivers of people with dementia. Ageing and Mental Health DOI:10.1080/13607863.1128882.
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Dementia and children
Talking to children about dementia    
Dr Baker published the highlights of research she has undertaken with children, people with dementia and the loved ones on what to know. She found five messages: adults should be honest with children; remind children the person with dementia is still a person; prepare them for the unexpected; talk about things they can still do with the person and look for positives (no data entry).
See also:   Back to top


Dementia: Through the eyes of women  
Dementia disproportionately affects women but the experiences and voices of women are missing from the research and literature. The report provides a snapshot of the experiences, thoughts and opinions of women affected by dementia: women with a diagnosis of dementia, women who are caring for family or friends, and women working in one of the caring professions (43 pages). 

Men and women feel differently about dementia 
A year long survey about the attitudes of 2500 men and women to dementia and how those affected should be cared showed major differences between males and females. For example, women were more fearful of dementia and more likely to support voluntary euthanasia. Men were more likely to view hospital care and medicine as a positive intervention and to believe they should contribute to their own care.
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3-5 November 2016 Dementia Today: Diverse Communities, Collective Action Alzheimers NZ Conference and 19th ADI Asia Pacific Regional Conference

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