Thinking Dementia - Issue 10 - June 2019

Welcome to the tenth edition of Thinking Dementia. This quarterly update features links to publications and other resources focusing on recent research and policy developments in the dementia space.

Featured articles:

 

This is our story: a qualitative research report on living with dementia

Alzheimers NZ commissioned this report to tell the story of the diverse lives and experience of New Zealanders living with dementia. 49 people living with dementia shared their experience. Issues addressed include diagnosis, valuing independence, the availability or otherwise of appropriate assistance and the role of care partners. The report shows that people with dementia can live meaningful lives but that this is not always easy. The respondents highlights a number of things they would like to be able to live better. Source: Alzheimers New Zealand and Litmus Research

This is our story: a qualitative research report on living with dementia


Respite in New Zealand: We must do better

This report sets out ideas and actions to develop a fairer and more sustainable respite system for New Zealand. The paper doesn’t dwell on the problems with current respite services which are well known. A key focus is the growing need for respite services in New Zealand. The paper is about action, and what is needed now to support improvement. Source: The New Zealand Carers Alliance in association with Alzheimers NZ and IHC and Synergia.

Respite in New Zealand: we must do better


WHO Guidelines on risk reduction

The WHO has issued Guidelines for reducing the risk of cognitive decline and dementia. These focus on regular exercise, non-smoking, avoiding harmful use of alcohol, weight control, eating a healthy diet and maintaining healthy blood pressure, cholesterol and blood sugar levels. The guidelines are designed for use by healthcare providers and governments, policy-makers and planning authorities. Source: World Health Organisation

WHO Guidelines on risk reduction

 

 Recent New Zealand reports

Experience of people with younger onset dementia in residential homes

This qualitative study gives voice to the opinions and perspectives of people with younger onset dementia and care givers when considering residential care designed for older people.  Loss of autonomy and ensuing stagnation or even institutional internment was much feared.  Appropriate exercise and purposeful occupational activities as well as emotional support were valued therapies but often lacking for this group. Source: Dementia Journal (summary only online)

Experience of people with younger onset dementia in residential homes


Supporting family and whānau of people living with dementia

This document provides recommendations for core education topics for family and whānau supporting people with dementia. Topics should include understanding of dementia; providing confidence in supporting people with dementia and learning about support services and organisations. Links to wide range of resources are provided. Source: National Dementia Framework Collaborative

Supporting family and whānau of people living with dementia


Are services for dementia improving?

Dr Matthew Croucher, clinical lead for the South Island Dementia Initiative, describes changes in services in the South Island since 2009. He notes there have been positive changes. A shared model of care for dementia has been developed.  Dementia is more usually treated in primary care and cross-sector engagement has improved. However he concludes that in the light of previously unmet need and population growth overall, services are worse than 2009.  Source: South Island Alliance

Are services for dementia improving?


Education needs of Health Care Assistants

Researchers from University of Auckland conducted 34 semi-structured interviews with Health Care Assistants (HCAs) which identifies their experiences with end of life care, the skills required for their work and examines the education provided for this. HCAs need education in the increasingly important communication and de‐escalation skills. Despite changes the education provided has not changed sufficiently to include these more complex skills. Source: Health and Social Care (summary only online)

Education needs of Health Care Assistants


Training and Development Needs of the Health and Disability Home and Community Workforce

This planning report describes the changing employment and training needs facing the home and community workforce. It addresses a range of issues including technological developments on the workforce; employers’ needs to support workforce capability development and how the current and future workforce landscape is planned to meet new and emerging client needs. Source: Home and Community Health Association and Careerforce

Training and Development Needs of the Health and Disability Home and Community Workforce


interRAI Annual Report 2017/18

The 2017/18 report describes the activities of that year. It focuses on the quality of data collection, quality indicators of services provided by aged care and interRAI measures of well being. It also describes the increasing use of interRAI data in academic research. Source: interRAI

interRAI Annual Report 2017/18

See also:

People with dementia living in the community – what interRAI can tell us


Loneliness is driving people to enter rest homes

Recent University of Otago research showed that loneliness and burnt out care partners are often reasons that otherwise physically and mentally healthy older people enter residential care. This conclusion was based on a large scale analysis of 54,000 people over 5 years. For example people who were lonely were nearly 20% more likely to enter homes even where they were physically healthy. Source: Journal of American Medical Directors Association (summary only online)

Loneliness is driving people to enter rest homes

 The experience of living with dementia

Evaluating a Dementia First aid course

English research has found that most care partners of newly diagnosed people are not prepared for many aspects of caring or the emotional cost associated with it. The researchers developed the Dementia First Aid course which was delivered in a four hour course. Recipients also completed a questionnaire on Alzheimer’s knowledge and carer stress which they repeated after 6 months. The results suggested that knowledge had increased and showed the value of dementia training as part of post-diagnostic support. Source: British Journal of Medical Practitioners.

Evaluating a Dementia First Aid course


Living well with dementia: personal accounts

This English booklet presents the personal stories of seven people living with dementia or care partners. These show that while living well with dementia has challenges that it is possible to grow beyond the diagnosis and continue to live a meaningful and valued life as part of family and community. The people describe different ways they have found to address the challenges that they experience. Source: NHS Central and North West London Foundation Trust

Living well with dementia: personal accounts


My Opinions Are Valid: What People with Alzheimer’s Want You to Know

This web site describes the development of a graphic pamphlet on the preferences of people with dementia. This was developed and distributed by a Catalonian organisation of senior centres and people with dementia who attended them. The graphic has 10 statements including such requests such as ‘Treat Me With Dignity’; ‘Include Me in Conversations’ and ‘My Opinions Are Valid. If I Believe Something, Don’t Say It’s Not True’. Source: Being Patient website

My Opinions Are Valid: What People with Alzheimer’s Want You to Know


Living with dementia; a meta-synthesis

This report reviewed 34 studies. The review shows that people with dementia strive to maintain continuity in their lives among continuous change. The emerging experience is influenced by access to and quality of personal and contextual resources such as physical environment and the social position of the person with dementia. Source: The Gerontologist


3 Nations Dementia Working Group

The 3 Nations Working Group is a group of people living with dementia in the United Kingdom. They aim to become the “go to” group for anyone seeking input on dementia and to influence public policies that impact on the lives of people with dementia and their families.  To date they have been involved in a wide range of activities including providing input onthe Prime Minister’s Challenge on Dementia 2020 and the Wales Dementia Action Plan 2018-2022.  They issue a newsletter 6 times a year (which you can sign up to). Source: 3 Nations Dementia Working Group

3 Nations Dementia Working Group


Guidelines on Dementia and Driving

These English Guidelines talk about driving with patients suffering from dementia or mild cognitive impairment. They were issued by a working group from several UK organizations including the Royal College of Psychiatrists and Royal College of General Practitioners and lay people. Although these guidelines are specific in its legal particulars to the UK, the document offers questions that all clinicians can use in talking with patients and family members to assess the driver's safety. Source: Core Guideline Development Group

Guidelines on Dementia and Driving

See also:

Dementia and driving guide for carers and families (Alzheimer’s Australia)
Handbook on driving (Alzheimers’s Society UK)

 The experience of care partners

Understanding and meeting the needs of the carers of people with dementia

This policy paper reviews the experiences and needs of care partners of people with dementia in different countries. The material draws on published research and the policy papers, practice and personal experience of key stakeholders). An important issue was building better access to information into everyday life so that people and families had greater scope to plan ahead. Source: University of Birmingham

Understanding and meeting the needs of the carers of people with dementia


A Better Visit

A Better Visit is a free app for iPads. Often family members struggle to interact and engage with a family member who no longer recognises them. It is designed to help families visiting family member living in residential care. This application assists with engaging the family members and results in a ‘Better Visit’ for everyone. Source: Dementia Australia

A better visit


WHO Training and Support Manual for care partners of people with dementia

The WHO are developing this guide for supporting care partners and family as part of their response to the Global Action Plan on the Public Health Response to Dementia 2017-2025.  This resource provides advice for carers to the emotional, financial and social impact of caregiving on families and relatives, while addressing the needs of people with dementia. It is intended to also be available as a written resource for those without the internet. Source: World Health Organisation

WHO training and support manual for care partners of people with dementia


Caring for a person with dementia

This guide provides care partners with a comprehensive range of information they will need to help their partner and to live well themselves. The topics range from understanding the diagnosis to end of life care and support. A wide range of resources are cited and though many are specifically English they are often useful. Source: Alzheimer’s Society

Caring for a person with dementia

 Health and social services for people with dementia

Fall prevention for people with dementia

Health Care Professionals were interviewed about the problems that people with dementia had with falls and ways to prevent these. They identified patient’s poor recall, planning and organisation skills as reasons for the greater number of falls suffered by people with dementia. Suggested responses included providing longer more frequent interventions; delivering services at home; adapting exercise intervention to use more visual aides and adapting standard interventions to each patient’s individual interests and needs. Source: BMJ Open

Fall prevention for people with dementia

See also:

Managing the elderly with dementia and falls

 Dementia Friendly communities

Establishing a dementia-friendly town

This media item describes how Alzheimer’s West Australia has led the establishment of a dementia-friendly town. It shows the roles that different people have played in the process.  Source: ABC

Establishing a dementia-friendly town


Evaluating the Guinness Partnership Project

Guinness Partnerships is a housing care and support organisation which  set out to become a dementia-friendly workplace in 2015. Over a thousand people with dementia live in Guinness homes. The goal was to better meet the needs of these residents. The evaluation showed the project has been successful in delivering improved quality in homes and service for customers, improved staff skills, the provision of tailored services, and improved efficiency savings. Source: Housing Learning and Improvement Network (LIN).

Evaluating the Guinness Partnership Project

See also:

Becoming a dementia friendly organisation (Source: Institute of Public Care and Guinness Partnership)


Creating a dementia trail in a regional park

A regional park in Australia is creating a one kilometre trail for people with dementia and their care partners. This includes features such as mass plantings of indigenous plants, a gentle swinging seat and an App with bird songs. A sensory trail will include wetlands and a boardwalk to allow people to touch trees. Source: Ballarat newspaper

Creating a dementia trail in a regional park

See also:

 Public knowledge and attitudes

Public attitudes to dementia

This report addresses the knowledge and attitudes to dementia of a sample of the UK general public. Fifty two percent knew someone with dementia, usually a family member.  Issues addressed included the effects of dementia on individuals, risk factors and the way that people could reduce these and an interest in brain health. Source: Alzheimer’s Research UK

Public attitudes to dementia – summary report

Singapore survey of knowledge and attitudes


Inclusion and Isolation

This short Australian report asked members of the public questions about their knowledge and attitudes to dementia. Most had heard of dementia and knowledge of its challenges was high. People believed that people with dementia were well supported. Only 37% of people said they were comfortable around people with dementia and 44% were unsure how to talk with someone with dementia. Source: Dementia Australia

Inclusion and Isolation

 Other international news and reports

A Dementia Strategy for Canada: Together We Aspire

The Canadian government has released a national dementia strategy as part of its response to the WHO’s Global action a plan on the public health response to dementia (2017-2025). It sets out a vision for organisations and individuals. It identifies three national objectives: i) to prevent dementia; ii) advance therapies and find a cure; and iii) improve the quality of life for people living with dementia and their care partners. Annual reports on progress will be released. Source: Canadian Government

A Dementia Strategy for Canada: Together We Aspire

See also:

National Dementia Strategies - What should Canada learn?

Japan’s new programme on response to dementia


International report on progress since G8 meeting on dementia

The report addressed the successes and challenges in the treatment of dementia since the initial G8 meeting in 2013 and looked ways forward to help accelerate progress to the 2025 goals. Four areas focussed on were i) the search for disease modifying therapy; ii) the challenge of living well; iii) the need for better care and iv) reducing the impact of dementia.  The report includes addresses from the Secretary-General of OECD, the Director General of the WHO, people with dementia and carers. Source: World Dementia Council

International summit on progress since G8 meeting


USA Alzheimer’s Association Facts and Figures

The annual report addresses issues such as prevalence (numbers with dementia), incidence (numbers of new cases), mortality and morbidity, paid and unpaid caregiving and the current and future costs of dementia. This report includes a section on brief cognitive assessments in primary care. Only 16% of older people have these tests annually compared with over 60% for other conditions such as heart, diabetes and blood pressure. The report suggests ways to improve this. Source: Alzheimer’s Association

USA Alzheimer’s Association Facts and Figures


Estimating the global number of care partners

This ADI report presents global estimates of informal care hours;  compares the global distribution of caregiver time and highlights gender patterns. Many caregivers express positive experiences in this situation. ADI estimate that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015, equating to 2,089 hours per year or 6 hours per day. Source: Alzheimer’s Disease International

Estimating the global number of care partners


Australian strategic research roadmap for dementia

The Strategic Roadmap for Dementia Research and Translation (Strategic Roadmap) was adopted in 2016. A review in 2018 led the endorsement of future priorities including continued research and funding; improving diagnosis and prevention; increasing fundamental understanding of causes and drivers of dementia and improving the quality and provision of care. Source: Government of Australia

Australian strategic research roadmap for dementia

See also

2017 Roadmap