Thinking Dementia #3 Recent research and policy developments
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Issue #3 - December 2016


Welcome to Alzheimers NZ's third edition of Thinking Dementia on recent research and policy developments. This newsletter presents a selection of recent journal articles, NGO reports, university and international government reports and media reports related to dementia. Information is arranged by topic, allowing readers to quickly locate areas of interest. 

Last month, Alzheimers NZ hosted the conference Dementia Today: Diverse Communities, Collective Action in Wellington. In a world first, 20% of registrations were from people with dementia and their carers. Major themes emerging from the conference were human rights and quality of life for people with dementia. Presentations and videos are available on the Alzheimers NZ website.

Happy reading and a merry Christmas!

In this issue

Feature articles

Healthy Ageing Strategy

The Ministry of Health's Healthy Ageing Strategy presents the strategic direction for change and a set of actions to improve the health of older people, into and throughout their later years.

Consumer guide to Australian clinical guidelines for treatment of dementia

We highlighted the Australian clinical guidelines for treating dementia in Thinking Dementia 2. This consumer guide to the clinical guidelines was developed by clinicians, people living with dementia, carers and researchers aiming to make the information easily accessible. It includes topics such as timely diagnosis, advance care planning, managing symptoms, and end-of-life care. (Source: The Cognitive Decline Partnership Centre)

Recent New Zealand articles

NEAC Advice on dementia to Associate Minister of Health

The National Ethics Advisory Committee (NEAC) recently presented advice to the Associate Minister of Health on how the health and social support services need to respond to people with dementia and their families. (Source: National Ethics Advisory Committee)

Record of New Zealand Dementia Summit

In late 2015 Alzheimers NZ, the NZ Dementia Cooperative and Carers NZ held the NZ Dementia Summit to start a national discussion about the way forward for dementia care in New Zealand. This record summarises key speeches, other discussion and proposed actions. (Source: NZ Dementia Cooperative, Alzheimers NZ and Carers NZ)

Updating the Mental Capacity Law in New Zealand

Dunedin lawyer Alison Douglass has published the results of a study on the appropriateness of the current mental capacity law for people with diminished mental capacity. This site includes links to a comprehensive executive summary, the full report, a radio interview and a clinical toolkit for GPs and other health practitioners. (Source: Law Foundation).

2016 Snapshot of the state of community organisations

This report surveyed 280 community organisations to better understand the sectors’ delivery, resourcing and capacity issues. It reports on service delivery, financial and organisational pressures. (Source: ComVoices)

Dementia Evidence Toolkit

The Dementia Evidence Toolkit is an easily searchable online database containing the latest scientific evidence on what works in dementia care and treatment. It is intended for dementia patients, their families and unpaid carers as well as professionals. (Source: Personal Social Services Research Unit, UK)

Special topic: early diagnosis

The 2011 World Alzheimer Report from Alzheimer’s Disease International focused on the benefits of early intervention (PDF). Promoting the benefits of early intervention is a key component of the English and Scottish National Dementia Strategies and it is promoted by many Alzheimer’s organisations including Alzheimers NZ.

See also:

Diagnosing dementia in general practice

This Dutch qualitative study explores GPs’ perceptions of their role in diagnosis. They usually saw their role as limited to recognising cognitive problems and assessing whether the patient needed referral to specialists. (Source: British Journal General Practice) See also:

Potentially unsafe activities and living conditions for people with undiagnosed dementia

This study of 7,000 older American found that those living in the community with probable dementia but without a diagnosis were twice as likely to [live alone] and to engage in risky behaviours as those with a diagnosis. (Source: Journal of the American Geriatrics Society)

Review of the benefits and challenges of early diagnosis

The reviewed reports outlined the benefits and difficulties associated with diagnosis while people were still free from dementia. (Source: Journal of Alzheimer’s Disease).

Global trends in prevalence and incidence of dementia

Health loss in New Zealand 1990 – 2013

The New Zealand Health Loss report demonstrated that neuropsychiatric disorders are now the leading cause of health loss, accounting for 19% of total Disability Adjusted Life Years. (Source: Ministry of Health)

Global Burden of Disease

The recent Lancet report (PDF, full report is available online) on the international burden of disease shows that, as populations age around the world, the number of deaths due to Alzheimer’s Disease and other forms of dementia has risen almost 40% since 2005.

Dementia now the leading cause of death in England and Wales

The most recent Office of National Statistics (ONS) report on the causes of mortality in England and Wales showed for the first time that Alzheimer’s disease and other dementias are the leading cause of death. (Source: Office of National Statistics UK)

Recent trends in dementia incidence and prevalence

The researchers have systematically reviewed nine recent major studies of trends in prevalence, incidence and mortality for people with dementia carried out since 1980. Population aging, and possibly people living longer with dementia, seem likely to be the greatest driver of prevalence. (Source: BioMedCentral)

Decline in incidence of dementia in the Framingham Heart Study

The participants in the Framingham Heart Study have been under surveillance for incidence of dementia since 1975. The prevalence of most vascular risk factors (except obesity and diabetes) and the risk of dementia associated with stroke, atrial fibrillation or heart failure have decreased over time, but none of these trends completely explain the decrease in the incidence of dementia. (Source: New England Journal of Medicine)

Report of the Lancet Neurology Commission

The Lancet Neurology Commission’s have released a comprehensive report which discusses epidemiology, prevention, genetics, biology, diagnosis, care and ethics. It observes that little progress has been made in identifying treatment to halt or reverse the disease. (Source: The Lancet)

National Dementia Strategies and Plans

Proposed national strategy for dementia in Canada

Canada’s Senate has recommended that the Federal Government should establish a Canadian Partnership to Address Dementia to create and implement a National Dementia Strategy. They recommended that this should include increased research funding and robust dementia surveillance, public awareness campaigns, increased support for informal caregivers, increased funding for home care services and research into innovative technologies and home care models. (Source: Government of Canada)

Denmark dementia friendly plan

Denmark has announced a national plan to make Denmark dementia friendly by 2025. The plan focuses on making Denmark a place where people with dementia can live dignified and safe lives, on tailor-made care giving and prevention for people with dementia and on supporting the friends and relatives of people with dementia.

The experience and needs of people with dementia

Engage, Enable, Empower

This booklet with 14 short stories has been designed by people living with dementia to help others in similar circumstances. (Source: Alzheimer’s Australia)

Living with dementia

This American document explores the impact that traditional medical care and societal misperceptions have on people living with dementia. (Source: Dementia Action Alliance [US])

Dementia and loneliness

Alzheimer’s Australia surveyed 1,500 people with dementia, their carers and a sample of the public on their experience of loneliness and social connection. The results showed that both people with dementia and their carers had a higher risk of loneliness than the general public. (Source: Alzheimer’s Australia).

Important issues that arise for people following diagnosis

The researchers interviewed people with mild dementia, relatives and caregivers to explore the medical and social topics that arise after for them after diagnosis. Medical treatment, assistance in everyday life and legal issues were the main topics raised. (Source: BMC Research Notes)

Unmet needs of people with dementia living in the community

Between 60-75% of people with dementia live in the community. This German study of 227 people with dementia in general practice found that that all but one had at least one unmet need. (Source: Jnl Alzheimer’s Disease)

Social activities which reduce cognitive decline

This Korean study aimed to determine the types of social activities which could reduce cognitive decline. It followed 1,800 participants in the Korean Study of the Ageing over four years. (BMC Geriatrics)

The experience and support needs of informal caregivers for people with dementia

How helpful are carers’ diaries

Carers’ diaries are not widely used to assist with gathering information about people with dementia in the community. This study compared problems identified by groups using or not using written diaries. (Source: University of Hertfordshire on behalf of Alzheimer’s Association [UK])

What social participation means for family caregivers

Family carers of older adults with dementia can become socially isolated. This Australian study of 343 family caregivers found that their view of social participation had changed over time. (Source: Conference presentation)

The impacts of caregiving on informal caregivers

This report by Alzheimer’s Australia explores the economic, social and health impacts of caring on the caregivers. It explores ways to support the informal carers. (Source: Alzheimer’s Australia)

Health services for people with dementia

E-Book on innovations in dementia care

This resource is designed to help those providers who want to develop more person centred community based support for people with dementia. (Source: Alternative Futures Group)

Nursing and dementia

The UK Making a difference in dementia strategy for nurses sets out how nurses can provide high quality compassionate care and support for people with dementia in all care settings including a person’s own home. (Source: UK Department of Health)

Health professional’s experience of Te Kete Marie initiative

The Te Kete Marie initiative was designed at the Mary Potter Hospice (in Wellington) to improve the care of people with dementia and related cognitive impairment in a short term inpatient unit

Training for non-pharmacological management of disturbed behavior

This article examines the development, core components, and initial outcomes of an evidence-informed, competency-based training programme in the prevention and management of behavioural symptoms of dementia in aged care services. (Source: Gerontology and Geriatrics Education)

Caring for people with advanced dementia

This briefing paper outlines the way that care staff can interact with people with advanced dementia to support their sense of social inclusion. (Source: Centre for Research on Families and Relationships, University of Edinburgh)

Evaluating the impact of auditing rest homes

Over the last six years the New Zealand Ministry of Health has upgraded its system for auditing and certifying regulated rest home providers. The study found that stakeholders hold positive attitudes toward the integrated audit process. (Source: Ministry of Health)

Residential Care Information Resource

The New Zealand Ministry of Health has produced an information resource to support people involved with the development or major reconfiguration of secure dementia care homes. (Source: Ministry of Health)

Hair care for people with dementia

This research explored the hair dressing experience of people with dementia. They concluded that hairdressing and self-vision was important for people with dementia and should be recognised as more important overall. Hairdressers should be recognised as integral to the support of people with dementia. (Source: Universities of Stirling and Manchester)
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Availability of documents
Full copies of most of the documents we cite are available online. However, we sometimes include information on articles of particular interest that aren’t available in full online, for example, where the topic is New Zealand research.
We refer to these documents as executive summaries. You are most likely to find access to this material at university libraries and DHB libraries.
Early detection of dementia
In this issue we also feature a section of material on the benefits of early detection. While many of the documents were produced within the last twelve months we have included several older documents of interest.
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