**2. Background**

Many older adults are not ageing in their place of origin as mobility increases within and between countries. Increases in net migration in countries with high rates of immigration, such as Australia, will see their growing older population become more ethnically diverse over time [1]. In Australia, linguistically diverse caregivers comprise 33% of caregivers of PLWD living in a community setting [2]. Health literacy rates are known to be generally lower in immigrant populations, and they continue to have increased difficulties when accessing health services and information [3]. For example, findings from a qualitative Australian study of 25 non-English-speaking community living adults from the former Yugoslavia suggest that language barriers, different expectations about medicines and the healthcare system resulted in mem‐ bers of this community being more likely to experience medication management problems [4]. Based on this example and anecdotal evidence from other linguistically diverse groups, it is likely that this population group of family caregivers may require additional support to safely and effectively manage medications for their older relatives who are living with dementia.

Regardless of ethnicity, people living with a dementia often need to manage complex medi‐ cation regimes. They may be prescribed one or more cognitive enhancing medications for the management of their dementia. This is especially the case for those who live in developed countries where early diagnosis and treatment are available [5]. These cognitive enhancing medications can be useful in managing some symptoms of early-stage dementia and delay institutional placement [6]. PLWD may also experience other age-related chronic co-morbid‐ ities such as diabetes, cardiovascular diseases, arthritis and osteoporosis [7]. As a result, it is common for older adults with dementia to also have a number of co-existing illnesses that may be partly or completely managed by the use of medication. Ongoing safe and effective medication use for the management of all co-morbidities is important for PLWD to avoid medication-related adverse events, prevent hospitalisation or placement into permanent institutionalised aged care and to maintain or improve their quality of life [8, 9].

**1. Introduction**

494 Update on Dementia

resources.

**2. Background**

Effective medication management enables people living with dementia to avoid hospitalisa‐ tions related to preventable medication errors and prolongs their ability to remain living within a community setting. This chapter describes the development and evaluation of a multilin‐ gual online information resource on medication management for family caregivers of people living with dementia (PLWD). The resource aims to improve medication management to enable PLWD to remain living at home, in their community for as long as possible. This resource is unique in that it targets not only caregivers within the general Australian community but also Italian and Macedonian immigrant caregivers who find themselves caring for someone with dementia in their host country, Australia. Qualitative research identified caregiver concerns regarding medication management and findings from a literature review were used to inform were used to inform the development of the information resource. The principle of universal access was incorporated into the website design, and the precautionary principle was applied in regard to health literacy when planning the content of the resource. The initial site evaluat‐ ed, changes were made, and a refined site developed and further evaluated in light of our two guiding principles and the reported usefulness of the site to caregivers. Lessons learned from the development and evaluations of the information resource to assist caregivers and PLWD with medication management tasks are explained. The chapter aims to outline a toolkit of resources that can be used by other projects to develop and evaluate similar information

Many older adults are not ageing in their place of origin as mobility increases within and between countries. Increases in net migration in countries with high rates of immigration, such as Australia, will see their growing older population become more ethnically diverse over time [1]. In Australia, linguistically diverse caregivers comprise 33% of caregivers of PLWD living in a community setting [2]. Health literacy rates are known to be generally lower in immigrant populations, and they continue to have increased difficulties when accessing health services and information [3]. For example, findings from a qualitative Australian study of 25 non-English-speaking community living adults from the former Yugoslavia suggest that language barriers, different expectations about medicines and the healthcare system resulted in mem‐ bers of this community being more likely to experience medication management problems [4]. Based on this example and anecdotal evidence from other linguistically diverse groups, it is likely that this population group of family caregivers may require additional support to safely and effectively manage medications for their older relatives who are living with dementia.

Regardless of ethnicity, people living with a dementia often need to manage complex medi‐ cation regimes. They may be prescribed one or more cognitive enhancing medications for the management of their dementia. This is especially the case for those who live in developed countries where early diagnosis and treatment are available [5]. These cognitive enhancing

Recent studies have documented the impact of dementia on a person's ability to safely and effectively manage medications [10–12]. The cognitive, social and physical losses associated with dementia compound to make ongoing independent medication management more difficult for PLWD [13, 14]. Cognitive losses may affect memory, attention, language, com‐ munication and decision making; all capabilities which are necessary to maintain autonomy regarding safe and effective medication management [10]. Cotrell et al's. [10] study of 47 caregiving/care recipient dyads indicated that 85% of PLWD relinquish some or all medication management tasks to their family caregivers over the course of their disease, compared to only 30% of older adults receiving caregiver assistance for other chronic illnesses. Similar results were found in a larger study by Thorpe et al. [12] of 566 dyads which found the majority of family caregivers will assume a medication management role throughout the progression of a dementia with 54% noting involvement at any stage of dementia and rates exceeding 90% in the later stages of the disease.

Specific medication management tasks carried out by a caregiver of a PLWD may include maintaining continuous supplies of medications, assisting with administration, making clinical judgements and communicating with healthcare providers and care recipients [15]. To be effective in their medication management role, caregivers need to not only be informed about what is prescribed but also be capable of asking relevant questions of healthcare professionals, be able to monitor medication adherence, be aware of and watch out for medication-related side effects. They also need to be able to grant or refuse consent for medication use or discontinuation if the PLWD is no longer capable of making this decision [16].

Medication management issues, including compliance concerns for PLWD may be resolved by involving a family caregiver in the medication management process where possible. This has been shown to be a somewhat effective approach in reducing the number of identified medication misadventures, especially if support from health professionals is given to care‐ givers in addition to the PLWD [17]. Ongoing access to information and support in their medication management role is necessary for caregivers in order to adjust to the changes which accompany the progression of disease in the PLWD [18]. However, findings from a number of studies indicate that there is a lack of information, training and support for family caregivers in their medication management role [15, 19, 20]. This lack of information was confirmed by our own search for paper based on online information material which found that no specific Australian resource was available that targeted caregivers of PLWD in their medication management role.

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 accessible to everyone.

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