1. Managing Medications when You Have or are Caring for Someone Living with a Dementia
J Mullan, P Burns, R Gillespie, L Harrison, A Baker, K Win, V Traynor

2. BACKGROUND One in three people will be diagnosed with a dementia
Most will be cared for in family homes
AIMS: to support medication management amongst people living with a dementia and their carers, with a focus on those from CALD backgrounds
One in three people will be diagnosed with a dementia before they die, most of whom will be cared for in family homes by their spouse or adult children. These informal caregivers need to understand how to support their family members' to manage their medications appropriately, in order to prevent adverse events and possible hospitalisations. Unfortunately, we know that there is currently little support for informal caregivers from Culturally and Linguistically Diverse (CALD) backgrounds. This project aimed to support medication management amongst people living with a dementia and their carers, with a focus on those from CALD backgrounds

3. SESIAHS Multicultural Health Grant Global Challenges Funding
2011/12
RG’s MPH
2012/13
Italian site developed
Publications
Global Challenges Funding
2015
Macedonian site developed, evaluated and refined
Future
Collaborate with Aston University, UK

4. METHODS
Stage 1 : Identifying issues described by ethnic minority informal caregivers as they manage medication. 3 focus groups and 7 individual interviews using semi structured interview guide.
Italian, Greek, Macedonian, Portuguese, Croatian and Dutch adult family caregivers

5. METHODS 2
Stage 2: Development of a multilingual dementia specific medication management information resource.
Stage 3: Pilot testing and evaluation of resource.

6. Stage 1: Major Themes
Medication management is a source of stress and may be a point of conflict for family caregivers
Family support of this caregiving role is considered to be extremely important
‘My husband ...he takes his own medication... but he only takes the blood pressure tablets because the other tablets he thinks do not do anything ....’ (Italian focus group)
‘So I got a big problem… because he’s got osteoporosis, he’s got a big lung problem. But he doesn’t want to take it. I can’t do anything…’ (Italian focus group)
‘We were finding too much on the floor, not only from hers but also from his....He took her medication instead of his. Oh it was just horrendous, it was just horrendous!’ (Greek adult child caregiver)

7. Stage 1: Conclusions
Family caregivers believe that they would benefit from external information and support regarding medication management
One way to help combat this stress and conflict is to provide all family caregivers good quality, timely information and resources from reputable sources which include healthcare professionals, support groups and trustworthy internet sources.

8. Stage 1: Conclusions
Information presented in easy to understand English and translated into community languages, as well as being made available in other formats, such as visual presentations will increase the accessibility and usefulness of resources.

9. Stage 2: Developing an information resource
Initial evaluation found: no comprehensive dementia specific medication management information resource is available.
Development of content for the new resource was guided by:
findings from qualitative study
information from stake-holders
Other key considerations: literacy level and readability , health literacy, cultural relevance, accessibility
Stake holders: e.g. Caregiver support workers, Community pharmacists,

10. Stage 2: Information resource Key messages
Undertake regular medication reviews
reduce regime complexity where possible.
Regular use of blister packaged medications
regularly checked for safe usage
Always enquire about whether or not medications can be crushed and/or mixed with food

11. Stage 2: Information resource Key messages 2
Go to reputable sources of information about medication
primary care physician, pharmacist, nurse
Use interpreter services when and/if possible
Attend caregiver support groups for ongoing information and support

12. Stage 2: Information Resource development and evaluation
An initial website with English and Italian versions was developed and pilot tested.

13. Stage 3
The results of this study informed the second iteration of the website (
Macedonian version of the materials
Managed using a content management system.  

15. EVALUATION Survey Monkey Google Analytics
Perceived Health Web Site Usability Questionnaire (PHWSUQ) for older adults
Health literacy levels (measured using Chew's three screening questions)
Google Analytics
Website live from 01 June 2015

16. GOOGLE ANALYTICS
2,903 sessions – 245 returning (35 returning more than nine times).
4 pages/session
962 sessions – two or more pages
179 >20 pages
Average visit 2 mins
Most were female (84%)
Majority aged between 45 – 54 yrs (25%)
Majority were new visitors (85.6%)

17. GOOGLE ANALYTICS Majority of visitors from Australia (36%)
A fifth were from USA (20%)
Visitors also from:
China (118)
Japan (63)
UK (49) & S. Korea (49)
Germany (41)
Brazil (35) &
Italy (34).

18. SURVEY MONKEY - Demographics
Majority aged between 55 – 64 yrs (41%)
Majority female (84%)
Highly educated (97% - tertiary studies)
All from Australia
Less than a fifth spoke a language other than English at home (18%)
Majority did not identify as carers (87%) *

19. SURVEY MONKEY – Internet Use
Use of Internet for >5yrs = 97%
Very comfortable using Internet (75%)
Online for >15 hrs/week = 62% *

20. SURVEY MONKEY – Perceived Health Website Usability Questionnaire
Range
Mean (SD)
Mean Converted*
Satisfaction
5 – 35
27.3 (7.1)
78%
Ease of Use
3 – 21
14.8 (3.7)
70%
Usefulness
15.9 (4.8)
76%
Mean
58.1 (14.3)
75%
* Mean value/highest possible score x 100 = total percentage
E.-S. Nahm, B. Resnick, and M. E. Mills, “Development and pilot-testing of the perceived health web site usability questionnaire (PHWSUQ) for older adults,” in Consumer-Centred Computer-Supported Care for Healthy People: Proceedings of NI2006, 2006, no. 1, pp. 38–44.

21. SURVEY MONKEY - Content
Trustworthy = 93.5%
Useful to people from your cultural background = 97%

22. Continuing Evaluation
Survey Monkey will be live until the end of September 2015
Usability testing (aiming for n=10)
Readability
Health on the Net criteria
Focus groups (aiming for n=20) with each language group

23. CONCLUSIONS
The results of the evaluation will inform final design changes to the website.
The site will be promoted to national bodies such as Alzheimer's Australia for inclusion on their website(s).
Funds will be sought to translate information into other languages frequently spoken in Australia.

24. CONTACT INFORMATION
Pippa Burns Robyn Gillespie

25. PUBLICATIONS
Gillespie, R.J., Mullan, J., & Harrison, L Managing medications: the role of informal caregivers of older adults and people living with dementia. A review of the literature. Journal of Clinical Nursing Article first published online: 20 DEC 2013 DOI: /jocn.12519
Gillespie, R.J., Harrison, L., & Mullan, J Medication management concerns of ethnic minority family caregivers of people living with dementia. Dementia 0(0) 1-16 Advanced Online Publication DOI: /
Gillespie, R.J., Mullan, J., & Harrison, L Developing a medication management resource for ethnic minority informal caregivers of people living with dementia. ERA Conference Proceedings November 2013