**3. Online resource development**

#### **3.1. Phase 1 Pilot online resource**

We aimed to develop a useful, easy to use, accessible, up-to-date and trustworthy resource that met the needs of our target group of caregivers and was also available for all caregivers and PLWD. In order to do this we first conducted a review of the literature and a qualitative research project involving participants from our target audience which included the genera‐ tion of older European immigrants who arrived in Australia following the Second World War. This group is now entering old age and are at high risk of developing dementia. These immigrants were mainly from southern European countries and as such the most common languages spoken among our target group included Macedonian, Italian, Greek Spanish, Maltese, Polish, Dutch and Hungarian [22]. Their education levels are generally low in both their original language and in English, especially among the women [23].

#### **3.2. Literature review**

To build our own knowledge of this topic and investigate other related research, a review of the relevant literature from January 2000 to April 2013 was conducted. This revealed a lack of research investigating the medication management experience of family caregivers, especially those caring for PLWD [24]. Furthermore, previous research of general medication manage‐ ment for older adults included linguistically diverse family caregivers; however, sample sizes were generally small or results for linguistically diverse groups had not been analysed separately [24]. We viewed this as a significant gap in the literature given that linguistically diverse caregivers make up a significant proportion of the family caregiving population in many countries, that have high immigration rates, like Australia.

Despite the limited availability of previous research, the main findings of the review concluded that family caregivers received little or no training, information or support as they performed medication management tasks [24]. The role is complex, and this complexity increases as medication regimens become more complicated. For instance, family caregivers are often responsible for the supply and scheduling of multiple medications, the administration of medications via different formulations (e.g. oral, rectal, transdermal patches, inhalers, injection, creams and drops), the calculation of dosages, the monitoring of side effects and communication with multiple healthcare providers.

#### **3.3. Qualitative study**

#### *3.3.1. Background*

Given the importance of ongoing safe and effective medication management for PLWD, we sought to fill the knowledge gap we had identified. Funding was obtained to develop an information resource for family caregivers of people living with dementia from linguistically diverse backgrounds. This group of caregivers were targeted as being the most in need of an information resource as evidenced by the findings of an earlier Australian report on the experiences of managing medications at home of 12 older adults and 10 family caregivers from linguistically diverse backgrounds [21]. The report highlighted that this group of Australian caregivers faced additional language and literacy barriers, requiring information to be available in their own language but also in a variety of formats to increase accessibility for those with low literacy [21]. In targeting this group which may have the lowest literacy and as a result the lowest health literacy levels, we aimed to produce a resource that was useful and

The following sections outline the development and evaluation of this online pilot resource.

We aimed to develop a useful, easy to use, accessible, up-to-date and trustworthy resource that met the needs of our target group of caregivers and was also available for all caregivers and PLWD. In order to do this we first conducted a review of the literature and a qualitative research project involving participants from our target audience which included the genera‐ tion of older European immigrants who arrived in Australia following the Second World War. This group is now entering old age and are at high risk of developing dementia. These immigrants were mainly from southern European countries and as such the most common languages spoken among our target group included Macedonian, Italian, Greek Spanish, Maltese, Polish, Dutch and Hungarian [22]. Their education levels are generally low in both

To build our own knowledge of this topic and investigate other related research, a review of the relevant literature from January 2000 to April 2013 was conducted. This revealed a lack of research investigating the medication management experience of family caregivers, especially those caring for PLWD [24]. Furthermore, previous research of general medication manage‐ ment for older adults included linguistically diverse family caregivers; however, sample sizes were generally small or results for linguistically diverse groups had not been analysed separately [24]. We viewed this as a significant gap in the literature given that linguistically diverse caregivers make up a significant proportion of the family caregiving population in

Despite the limited availability of previous research, the main findings of the review concluded that family caregivers received little or no training, information or support as they performed

their original language and in English, especially among the women [23].

many countries, that have high immigration rates, like Australia.

accessible to everyone.

496 Update on Dementia

**3.2. Literature review**

**3. Online resource development**

**3.1. Phase 1 Pilot online resource**

A qualitative study, including focus group discussions and one-on-one interviews, was conducted in order to understand the everyday medication management experiences of linguistically diverse family caregivers of PLWD living in the Illawarra region, a multicultural urban area south of Sydney, Australia, with a population of 450,000. One quarter of people resident in the area are born overseas and 14.5% report speaking a language other than English at home [25].

The research team worked in partnership with the local multicultural health services in order to make contact with linguistically diverse family caregivers of PLWD living in the Illawarra. Local community workers involved with the area's carer support groups noted that family caregivers experienced isolation, having little time available outside of their caregiving role, low English proficiency and limited transport options. It was also noted that dementia was viewed with considerable stigma by many linguistically diverse communities and family caregivers may not identify as caregivers, as the roles they take on are seen as a normal part of family responsibility [26]. This knowledge and the established relationships formed by the multicultural workers were invaluable to the research team.

#### *3.3.2. Findings*

A total of 29 participants from five different cultural groups participated in the three focus groups and seven semi-structure interviews which were conducted between July and October 2012 (see **Tables 1** and **2**). The majority of the focus group participants were spouse caregivers, while most of the individual interviews were conducted with adult child caregivers. The majority of the participants were female, with only three male caregivers included in the study. The dominance of female participants reflects the gendered nature of informal caregiving and is comparable with samples in other studies of family caregivers of older adults and people with dementia [11, 27, 28]. Further details of the methodology of this study and the major findings have been published elsewhere [29].


**Table 1.** Focus groups.


**Table 2.** Semi-structured individual interviews.

Overall, the following key themes were identified from the qualitative data:


Quotes to support these four key themes are provided below:

**1.** *Managing medication is a source of stress for family caregivers.*

Caregivers reported stress resulting from their medication management role as they managed complex medication regimes. Sometimes these difficulties arose as an outcome of the progression of dementia:

"He would say "No, No! 'That's not the tablet I'm supposed to have now' or 'I had it before!' or 'that's the one I'm supposed to have later in the night" so I just ignored this for a while and we would start all over again"…".Some‐ times I gave him the tablet and he would take a sip of water and then next minute I found it, that tablet, on the floor. He spat it out!"' (Greek spouse caregiver interview)

Caregivers adopted various strategies to help them manage this stress. The most common was the use of blister packaged medications prepared weekly by a pharmacist.

This strategy was not always failsafe:

"My friend, his wife she has a Webster (blister) pack and he was not there…. she took the whole pack at once and had to go to hospital". (Macedonian Focus Group)

"And there were occasions when he was taking hers. He took her medication (pack) instead of his!" (Greek adult child caregiver interview):

**2.** *Medication management may be a point of familial conflict that needs to be carefully controlled.*

Caregivers lost trust in their relative's ability to manage their medications autonomously when they observed medication errors being made. This often became a source of conflict as the PLWD hoped to maintain autonomy while the caregiver feared that medication errors could result in problems.

We were finding too much on the floor, not only from hers but also from his. Oh it was just horrendous, it was just horrendous!….. "And when we got the Webster (blister) packs he was so angry with us. He said 'What do you think?! Do you think I can't look after my medications?!'" (Greek adult child caregiver interview)

Crushing medications was the most common strategy adopted by caregivers in order to avoid further conflict around medication administration.

So we started hiding the medication in food, so we crushed it for example, put it in some yoghurt if it was breakfast time". (Italian adult child caregiver interview)

**3.** *Family support of this caregiving role is important.*

**Nationality Number of caregivers Gender Carer status**

Italian *n* = 2 Female Adult child caregivers

Dutch *n* = 1 Female Spouse caregiver Croatian *n* = 1 Female Adult child caregiver Macedonian *n* = 1 Female Adult child caregiver

**1.** *Managing medication is a source of stress for family caregivers.*

Quotes to support these four key themes are provided below: **1.** *Managing medication is a source of stress for family caregivers.*

**3.** *Family support of this caregiving role is important.*

*support regarding medication management.*

of the progression of dementia:

caregiver interview)

This strategy was not always failsafe:

Group)

**Table 2.** Semi-structured individual interviews.

498 Update on Dementia

Greek *n* = 2 Female 1 adult child/1 spouse caregiver

Overall, the following key themes were identified from the qualitative data:

**2.** *Medication management may be a point of familial conflict that needs to be carefully controlled.*

**4.** *Family caregivers believe that they would benefit from more sources of external information and*

Caregivers reported stress resulting from their medication management role as they managed complex medication regimes. Sometimes these difficulties arose as an outcome

"He would say "No, No! 'That's not the tablet I'm supposed to have now' or 'I had it before!' or 'that's the one I'm supposed to have later in the night" so I just ignored this for a while and we would start all over again"…".Some‐ times I gave him the tablet and he would take a sip of water and then next minute I found it, that tablet, on the floor. He spat it out!"' (Greek spouse

Caregivers adopted various strategies to help them manage this stress. The most common

"My friend, his wife she has a Webster (blister) pack and he was not there…. she took the whole pack at once and had to go to hospital". (Macedonian Focus

"And there were occasions when he was taking hers. He took her medication

**2.** *Medication management may be a point of familial conflict that needs to be carefully controlled.*

was the use of blister packaged medications prepared weekly by a pharmacist.

(pack) instead of his!" (Greek adult child caregiver interview):

Many caregivers in our study noted that they shared medication management tasks such as picking up prescriptions or taking the PLWD to the doctor to have medication pre‐ scriptions written. The burden of medication administration was also shared with other family members:

"Yes, and the girls (daughters) are here all the time, in and out and sometimes they would encourage him to take this and that". (Greek spouse caregiver interview)

**4.** *Family caregivers believe that they would benefit from more sources of external information and support regarding medication management.*

Caregivers noted a general lack of information and support available to them in their medication management role even though they spoke of contact with community pharmacists, general practitioners (GP), geriatricians and family caregiver support groups. Caregivers noted that pharmacists were more accessible sources of information than doctors.

"You know we would go and ask the pharmacist when we were picking up the Webster (blister) pack, you know most of the time it was the pharmacist not the GP". (Macedonian adult child caregiver interview)

Some participants used internet sources for information to assist with their medication management role.

"Two tablets were interfering with each other and it was my daughter who saw it in the computer and she told the doctor". (Portuguese Focus Group)

Overall, the caregivers suggested that they lacked information about common medica‐ tion-related side effects such as constipation, resulting from the use of pain medication, as well as concerns relating to the use of multiple medications.

"Mum's on 12 or 10 or something and it's just such a chemistry set inside a body and how it reacts with Mum is so different to how it might react to someone else and so how can they get it right? You know that's what I'm wondering and especially at Mum's stage where the dementia is; what we should really be worrying about, just to make her life more comfortable from now….. Does she really have to worry?…. If you stopped something like cholesterol medication or thyroid medication she'll drop dead tomorrow, I don't know? I don't want that. But all the other peripheral medications are they really necessary, you know are they really necessary?" (Italian adult child caregiver interview)

Spouse caregivers in particular faced additional challenges in managing medications resulting from language barriers and a lack of access to appropriate services.

"I go to a chemist where there is a Portuguese girl. We understand each other. It's the other ones I can't understand a word. I like to go in when she is working but she only works one day a week". (Portuguese Focus Group)

#### **3.4. Resource development**

#### *3.4.1. Background*

Once we had gathered the information based on our aforementioned literature review and qualitative study, we used our findings to inform the content of a pilot version of the resource to enable initial evaluation. Clearly a comprehensive information resource was needed to address the many medication management issues and/or questions caregivers faced. We wanted to design something that would be accessible to all, even for those with limited literacy. We also wanted to provide reliable information that could be kept up to date and could be revisited as the needs of the caregiver(s) changed. For this reason, the research team decided to produce an online resource.

An online resource has the advantage of being available at all times of the day and can be bookmarked and revisited if information is forgotten or caregiving requirements change [30]. The internet allows both written and oral versions of the information to be presented, ad‐ dressing potential literacy issues. It also enables different language versions to be added to the resource, overcoming language barriers. We acknowledged that some of the older spouse caregivers might not be able to access this resource as many older adults are not familiar with technology use [31]. However, we hoped that the resource would be accessed by the adult children of spouse caregivers or could be used as a resource during family caregiver support group meetings.

We were mindful of the fact that the health information we provided online needed to be both understandable and reliable. This is especially true when considering older people living with a dementia and their caregivers; as it is highly probable that they are less likely to have the time or ability to evaluate online health information. We sought to ensure the reliability of the content by basing the content on current research findings. Caregivers were referred to links for other reliable sites if they wanted further information.

We knew that in developing our resource we needed to address literacy and health literacy concerns. Approximately 44% of Australians have problems in understanding health infor‐ mation [32]. Poor health literacy is particularly prevalent amongst older adults especially those with limited education, low incomes and from linguistically diverse populations [33, 34]. In order to cater for those with low health literacy, we drew on current health literacy research [35–37] and guidelines for web design suited to older adult users [38, 39] to guide the content and design of the resource.

#### *3.4.2. Addressing literacy concerns*

Overall, the caregivers suggested that they lacked information about common medica‐ tion-related side effects such as constipation, resulting from the use of pain medication,

"Mum's on 12 or 10 or something and it's just such a chemistry set inside a body and how it reacts with Mum is so different to how it might react to someone else and so how can they get it right? You know that's what I'm wondering and especially at Mum's stage where the dementia is; what we should really be worrying about, just to make her life more comfortable from now….. Does she really have to worry?…. If you stopped something like cholesterol medication or thyroid medication she'll drop dead tomorrow, I don't know? I don't want that. But all the other peripheral medications are they really necessary, you know are they really necessary?" (Italian adult

Spouse caregivers in particular faced additional challenges in managing medications

"I go to a chemist where there is a Portuguese girl. We understand each other. It's the other ones I can't understand a word. I like to go in when she is working but she only works one day a week". (Portuguese Focus Group)

Once we had gathered the information based on our aforementioned literature review and qualitative study, we used our findings to inform the content of a pilot version of the resource to enable initial evaluation. Clearly a comprehensive information resource was needed to address the many medication management issues and/or questions caregivers faced. We wanted to design something that would be accessible to all, even for those with limited literacy. We also wanted to provide reliable information that could be kept up to date and could be revisited as the needs of the caregiver(s) changed. For this reason, the research team decided to

An online resource has the advantage of being available at all times of the day and can be bookmarked and revisited if information is forgotten or caregiving requirements change [30]. The internet allows both written and oral versions of the information to be presented, ad‐ dressing potential literacy issues. It also enables different language versions to be added to the resource, overcoming language barriers. We acknowledged that some of the older spouse caregivers might not be able to access this resource as many older adults are not familiar with technology use [31]. However, we hoped that the resource would be accessed by the adult children of spouse caregivers or could be used as a resource during family caregiver support

resulting from language barriers and a lack of access to appropriate services.

as well as concerns relating to the use of multiple medications.

child caregiver interview)

**3.4. Resource development**

produce an online resource.

group meetings.

*3.4.1. Background*

500 Update on Dementia

Based on evidence that in order to improve health literacy, information needs to be written at a grade 8 or below level [36], health literacy guidelines [35, 37] were followed to improve the readability of our online resource. We used plain language, avoiding overly technical jargon wherever possible. Sentence structures were simplified, an active voice used and dot point lists used where appropriate. Simple visuals were included if they would aid understanding allowing for white space on the page to avoid clutter. Furthermore, an audio version of each page (both in English and Italian) was made to cater for those who might have a stronger command of the oral language, as opposed to written text available in both languages.

#### *3.4.3. Addressing website accessibility*

Working on this assumption that many of our site visitors would be older people and/or their adult children, we approached the web design process aiming to make the website universally accessible. Our pilot web design was informed by the SilverWeb guidelines [39], and the checklist for the development of senior friendly websites available at https:// www.nlm.nih.gov/pubs/staffpubs/od/ocpl/agingchecklist.html [38]. A larger font size and a sans-serif font were used in the written text, while avoiding yellow, green and blue colours to accommodate declining visual acuity. Visual content was kept to a minimum, which meant that the resource included only text relevant images. Navigation buttons were large, and each page had prompts to click forward or return to previous pages. Menu tabs were organised to make it easy to locate relevant information and the need for scrolling on pages was avoided where possible.

#### *3.4.4. Content of the online Phase 1 resource*

The key messages of the site included recommendations to:

**•** Undertake regular medication checks and reviews with a pharmacist and/or doctor familiar with the PLWD.


The site also described practical strategies to help the person with dementia to take the right medicines at the right time. It was hoped that these strategies would also reduce familial conflict and stress experienced by the caregivers in their medication management role. The main recommendation was to use blister packaged medications; regularly checking for their ongoing safe usage, and as suggested by Zedler et al. [40] to help improve medication adherence. Blister packs also offer benefits for the PLWD and their caregiver by allowing them to see which medications need to be taken when, and whether or not they have been taken appropriately. Given that many caregivers reported crushing medications in our qualitative study, a page was included to alert caregivers that not all medications are safe to crush. The online resource advises PLWD and/or their caregivers to ask their pharmacist or doctor before crushing any medications or to enquire about alternate formulations (e.g. liquid or transdermal patches) that would avoid the need to crush medications.

Finally, the online resource also provided additional information regarding other reputable websites, support groups, translation services and organisations which could help facilitate safe and effective medication management for PLWD.

#### **3.5. Evaluation of Phase 1 pilot resource**

#### *3.5.1. Survey evaluation of the pilot resource*

We aimed to evaluate the pilot website considering our two guiding design principles: the accessibility of the site and the accessibility of the content, especially for our target audience. An adapted version of the 'Quality checklist for reviewing health information' [41] was used to initially assess the resource. This checklist asks the user to review the content, usefulness, appeal, cultural relevance, readability, presentation, accessibility, credibility and need for improvement of the information resource. The checklist, only available in English, was completed by nine users of the pilot resource all of whom gave positive responses. The survey respondents also provided useful suggestions about additional information regarding specific medications, the need for other formats such as a DVD version of the resource, and translation of the resource in to other languages.

#### *3.5.2. Support group evaluations of the pilot resource*

Evaluation of the pilot site was also undertaken with caregivers from English and Italian support groups, who also suggested a DVD version of the resource, as evident in the following participant quote:

"Not sure how well used the online resource will be for the older Italian carers who I suspect may not be well versed in using this sort of media however I think having things online is the way to go in the future…..even using a DVD version would be hard for them". (Italian adult child caregiver)

Support group participants were positive about the resource, suggesting that the information on the site was well received, comprehensive and useful. They suggested including support group contact details on the site and were not in favour of 'pop-outs' for some of the visual components on the site.
