Informed Consent for Research Involving People with Dementia: A Grey Area

By Cubit, Katrina | Contemporary Nurse : a Journal for the Australian Nursing Profession, February/March 2010 | Go to article overview

Informed Consent for Research Involving People with Dementia: A Grey Area


Cubit, Katrina, Contemporary Nurse : a Journal for the Australian Nursing Profession


ABSTRACT

Research involving people with dementia has been flagged as a key priority by Alzheimer's International. Dementia has been an Australian National Health Priority since 2005, yet there are no clear guidelines for seeking and obtaining informed consent from people with dementia to participate in observational research. Informed consent is an ethical requirement for the conduct of research involving humans. Although many people with dementia are able to express a desire to be involved in research, the insidious progression of the disease reduces a person's ability to understand and appreciate the consequences of involvement. This paper explores the author's journey of seeking and obtaining informed consent for a mixed methods study which involved the observation of older people with dementia.

Keywords: nursing; mixed methods research; dementia; consent

INTRODUCTION

As the population ages, governments, health care providers, communities and families are faced with the significant burden of caring for people with dementia. Dementia is becoming increasingly prevalent in ageing populations worldwide (Access Economics, 2005). In 2003, the number of people with dementia in Australia was estimated to be 173,000. The total health and welfare system expenditure for dementia in the same year was estimated at $1.4 billion (AIHW, 2007a). Predictions are that by 2050 more than 730,000 Australians (2.8% of the projected population) will have dementia (Access Economics, 2005). As a cure for dementia is not yet on the horizon, there is a growing imperative to conduct research into finding ways of slowing the dementia process and for managing the behavioural and other associated symptoms.

Conducting research involving people with cognitive decline associated with dementia is however fraught with difficulties. The most problematic of these is the arduous process of seeking and obtaining informed consent in a moral and ethical way. Informed consent can be difficult to obtain due to the nature of the disease process which may preclude people from providing consent for themselves.

DEMENTIA AS A RESEARCH PRIORITY

In Australia dementia was recognised as a National Health Priority in 2005 (Commonwealth Department of Health & Ageing, 2005). This resulted in a Federal Budget initiative by the then Coalition Government which provided funding of $320.6 million over 5 years for the purpose of enhancing dementia research, primary care and early intervention opportunities.

Since then, Alzheimer's Disease International identified the need for collaborative dementia research in the Asia Pacific region (Access Economics, 2006). In the same year, the National Framework for Action on Dementia 2006-2010 (AHMC, 2006) flagged dementia research as one of five key priority areas for action. Interestingly, in the challenges identified, the potential difficulties in obtaining informed consent from people with dementia were not recognized.

ETHICAL RESEARCH

When people with dementia are to be considered as research participants, great care must be taken to ensure their human rights are maintained. Responsible researchers must preserve the dignity and respect of participants, ensure cultural differences are acknowledged and that the potential for causing harm to participants is avoided (National Health & Medical Research Council; Australian Research Council & Universities Australia, 2007). In Australia, guidelines are available for conducting responsible and ethical human research. These include The National Statement on Ethical Conduct in Human Research 2007 and the Australian Code for the Responsible Conduct of Research (NH&MRC, ARC & Universities Australia, 2007). These guidelines acknowledge that all kinds of research involving or impacting upon humans should conform to the highest standards of academic integrity and ethical practice. To adhere to these guidelines, researchers have an obligation to: understand and comply with ethical principles of integrity; respect for persons; justice and beneficence; and where required, gain written approval for research from a Human Research Ethics Committee (HREC). …

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

Informed Consent for Research Involving People with Dementia: A Grey Area
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.