Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 Jul 7:16:129.
doi: 10.1186/s12877-016-0305-3.

Development of guidelines for family and non-professional helpers on assisting an older person who is developing cognitive impairment or has dementia: a Delphi expert consensus study

K S Bond  1 , A F Jorm  2 , B A Kitchener  3   4 , C M Kelly  3   4 , K J Chalmers  3
Affiliations

Development of guidelines for family and non-professional helpers on assisting an older person who is developing cognitive impairment or has dementia: a Delphi expert consensus study

K S Bond et al. BMC Geriatr. .

Abstract

Background: Assisting a person with dementia can lead to significant carer burden and possible negative outcomes for the person. Using the Delphi method, this study developed expert consensus guidelines for how family and non-professional carers should assist a person who is developing cognitive impairment, or has dementia or delirium.

Methods: A systematic search of websites, books and journal articles was conducted to develop a questionnaire containing items about the knowledge, skills and actions needed for assisting a person who is developing cognitive impairment, or has dementia or delirium. These items were rated over three rounds by two international expert panels comprising professionals specialising in research or treatment of dementia, and dementia carer advocates.

Results: A total of 65 participants (43 in the professional panel and 22 in the carer advocate panel) completed all three survey rounds. Of the 656 survey items that were rated, a total of 389 items were endorsed by at least 80 % of each panel. The endorsed items formed the basis of a guidelines document that explains what family and non-professional carers need to know and do when assisting a person who is developing cognitive impairment, or has dementia or delirium.

Conclusions: The two groups of experts were able to reach substantial consensus on how to assist a person who is developing cognitive impairment, or has dementia or delirium.

Keywords: Confusion; Delirium; Delphi method; Dementia; Dementia carer; Dementia guidelines.

PubMed Disclaimer

Figures

Fig. 1
Fig. 1
Results of the literature search
Fig. 2
Fig. 2
Information about the rated items. *Includes 1 item that was developed by the team as the result of a newly published resource. This item was endorsed in Round 3
See this image and copyright information in PMC

References

    1. Prince M, Wimo A, Guerchet M, Ali G-C, Wu Y-T, Prina M. World alzheimer report 2015. The global impact of Dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International (ADI); 2015.
    1. Caron CD, Bowers BJ. Deciding whether to continue, share, or relinquish caregiving: caregiver views. Qual Health Res. 2003;13(9):1252–1271. doi: 10.1177/1049732303257236. - DOI - PubMed
    1. Caron CD, Ducharme F, Griffith J. Deciding on Institutionalization for a Relative with Dementia: the most difficult decision for caregivers. Can J Aging. 2006;25(02):193–205. doi: 10.1353/cja.2006.0033. - DOI - PubMed
    1. Lewis M, Hepburn K, Narayan S, Lally RM, Corcoran-Perry S, Maddox M, Dropkin K, Hasse S. Decision-making by family caregivers of elders experiencing dementia. Am J Alzheimers Dis Other Demen. 2000;15(6):361–366. doi: 10.1177/153331750001500607. - DOI
    1. Davis LL, Gilliss CL, Deshefy-Longhi T, Chestnutt DH, Molloy M. The nature and scope of stressful spousal caregiving relationships. J Fam Nurs. 2011;17(2):224–240. doi: 10.1177/1074840711405666. - DOI - PMC - PubMed

MeSH terms