3.1 Research design

To achieve the research objective, data was collected through semi-structured face-to-face interviews. The interviews were conducted between January and March 2019 in facilities for people with disabilities in Styria (Styria is an Austrian province).

3.2 Data collection and recruitment

In order to recruit participants, we searched the internet for social service providers offering care for people with intellectual disabilities and dementia. Then we contacted the managers of the institutions by phone to inform them about the research project and ask if they would like to participate. Subsequently, they also received written information about the project and the study selection criteria (participants were required to have 2 years working experience in a facility for people with disabilities, and 1 year of experience working with people with intellectual disabilities and dementia) via e-mail. The information about the project was passed on to the formal caregivers through the managers of the institutions. If formal caregivers were interested in participating, their contact information was collected by the managers and passed on to the project team. These persons were contacted directly by telephone and the interviews were organised.

The interviews were conducted by Dominik Pendl and Mathieu Glatz in the offices of the respective institutions. The interviewers were not known to the participants before the interview. The interviews lasted between 21 and 56 min (M = 26.86, SD = 12.19) and were recorded using mobile phones.

Prior to the start of the recording, participants were informed that participation was voluntary and gave written consent to be interviewed and for the interviews to be recorded. Participants were also informed of the purpose of the study and that the results would be published. They were also informed that their names and the names of the institutions and individuals mentioned in the interview would be replaced with pseudonyms.

Before starting the recording, information on the total number of clients, the number of clients with intellectual disabilities and dementia, and on the care ratio in the respective institution was requested and noted on the interview guide.

3.3 Participants

The resulting sample consisted of 10 professionals (seven women, three men), working in different Styrian facilities for people with disabilities. Although the professionals' educational level is not homogeneous within the sample, this was seen as an advantage since it allows for the collection of a broader spectrum of views and experience. In accordance with the scheme suggested in the International Standard Classification of Education (UNESCO, 2012), three professionals belong to ISCED level three, two professionals each to level four and level five, and three professionals to level seven. At the time of the study, participants' work experience ranged from 2 to 25 years. Fifty percent were working in a day care centre for people with disabilities (see Table 1).

3.4 Data collection

A semi-structured interview guide was designed in order to explore the professionals' perspectives on caring for people with intellectual disabilities and dementia. This method of data collection enables researchers to gain insights into the participants' world, their interests and feelings (Niebert & Gropengießer, 2014), and to obtain a differentiated collection of qualitative data (Helfferich, 2019). The interview guide is intended to provide guidance for the researcher during the interview, ensuring that all important questions are asked (Zierer et al., 2013). For this purpose, the interview was structured based on four previously defined areas of interest, and for which specific questions could be asked in order to deepen the analysis. The order of focus was organised in terms of content, although changes were still possible throughout the interview. A series of guiding questions was employed for each of the four areas, and a variety of sub-questions were also assigned depending on the topic (see Table 2).

3.5 Data analysis

The data were transcribed and coded using MaxQDA Version 2018.2. Structured qualitative content analysis (Mayring, 2016) was used for data analysis. It involves organising and categorising data into meaningful themes and patterns that allow researchers to identify and interpret the underlying meanings, attitudes, and experiences expressed by participants. The aim of the structured qualitative content analysis is to extract a specific structure from the material under study. For this purpose, a codebook (see Table 3) was developed using the following procedure: (1) based on the interview guide, the main and sub categories were created deductively; (2) anchor examples exemplifying each category were selected; (3) coding rules were defined to facilitate the allocation of interview segments to the appropriate categories. Upon completion of the codebook, two interviews were analysed by two independent coders (Dominik Pendl and Mathieu Glatz). The results were then compared, and the category ‘conflicts’ was added to the codebook. After this adjustment, all interviews were analysed independently by Dominik Pendl and Mathieu Glatz. In the main run of the analysis, all text passages were assigned their respective codes.

4.1 Perceived challenges and new tasks

4.2 Interviewee's wishes when working with people with intellectual disabilities and dementia

In order to provide good care for people with intellectual disabilities and dementia, formal caregivers in the residential homes would like to see that the existing spatial resources are more closely adapted to their specific needs. People with intellectual disabilities and dementia need to live in smaller groups so that formal caregivers may have the possibility of responding to individual needs. Single rooms also need to be made available so that residents may have the possibility to retreat and be alone if necessary. Our results show that currently this is mostly not the case.

When planning residential and care facilities, more thought needs to be given to enabling residents to orientate themselves and to find their way around easily. Furthermore, formal caregivers in the residential home would like security systems such as sensor mats or infrared sensors installed in the care facilities. This would improve the safety of residents, particularly at night, when only few staff are present.

Interviewees in both the residential and day care centres also expressed the need for more staff. For persons with intellectual disabilities and/or dementia, the ideal staff ratio is one-to-one. The formal caregivers also stated that the currently relatively rigid structures in nursing and care need to be revised in order to allow more flexibility in responding to individual needs. One formal caregiver from a residential home stated:

4.3 Education and training on the topic of intellectual disability and dementia

All participants indicated that education and training are an important basis for providing adequate high-quality care and support for people with intellectual disabilities and dementia. Especially for new staff members, it is important that they are appropriately trained and able to respond to the needs of the persons they care for.

This poses a difficult problem because the topic of dementia and disabilities is often neglected in caregiver training curricula. One participant commented:

Only through special training and courses can formal caregivers delve into the topic of disability and dementia. Although having a client living with dementia is the main motivation behind attending such courses, the decision to attend is often made when the stage of dementia is already quite advanced, and symptoms are clearly recognisable.

Even though education and training are of great importance, the specific education and training on the topic of intellectual disability and dementia currently on offer is very limited. For example, one participant says:

Existing training courses have either a direct focus on dementia or on intellectual disability, but hardly ever on both topics. Formal caregivers mostly attend training courses on dementia with a focus on the care of older persons and they rate their quality as very good. The lecturers usually have very broad expertise and many years of professional experience. The participants stated that they mainly attended training on the concept of validation and the psychobiographical care model according to Böhm. Although these concepts can also be used in the care and support of people with intellectual disabilities, they must be adapted accordingly. The specific use of these concepts when working with people with intellectual disabilities is not taught in the training courses. This was another source of conflict for those interviewed. One person said, for example:

5.1 Challenges faced by formal caregivers

One of the biggest challenges that formal caregivers face when caring for people with intellectual disabilities and dementia is managing conflicts between residents with and without dementia. Such conflicts occur primarily when people without dementia opine that people with dementia do not adhere to existing rules of behaviour or facility regulations or when they are no longer able to complete familiar tasks. In line with previous research, changes in behaviour, such as shouting or singing, also lead to frequent conflicts between peers (Cleary & Doody, 2017a). In the absence of some form of explanatory rationale, for people without dementia, the behavioural changes of those with dementia often remain incomprehensible. One of the new tasks of the formal caregivers is therefore to inform and educate those with no dementia about the impact of such a disease on co-residents. One way to respond to this new task would be the use of targeted education intervention, such as that developed by Lynggaard and Alexander (2004). Such intervention enables people without dementia to understand that the behavioural changes among those with dementia are involuntary and thus cannot be controlled by those affected. In addition to improving general understanding, Lynggaard and Alexander (2004) also state that such intervention helps improve peer interaction and leads to greater support for those with dementia.

5.2 Shifting focus to maintaining quality of life

Formal caregivers stated that maintaining the quality of life of people with intellectual disabilities and dementia is one of their main goals. The changes in mental health and cognitive performance that accompany dementia have a massive impact on people's quality of life (Gärtner, 2016), as do the associated loss of interest and incapacity in daily life (Langner, 2020). The formal caregivers interviewed stated that for people with intellectual disabilities and dementia the focus needs to be placed more on maintaining existing skills and abilities than on learning new skills and abilities. In particular our findings are in line to those of Dekker et al. (2021). In their study, formal caregivers also stated that support for people with intellectual disabilities and dementia is shifting to a developmental approach aimed at maintaining skills and comfort. Sheerin et al. (2020) also emphasise the importance of maintaining current levels of functioning and independence through increased support and guidance. Of equal importance here as mentioned by Roes et al. (2019), is the creation of relationships that make the person with dementia feel heard, understood and accepted. Person-centred psychosocial interventions have thus proven to be particularly effective in improving the quality of life of people with intellectual disabilities and dementia (Watchman et al., 2021). Likewise, residing in a familiar environment is also an important resource for people with intellectual disabilities and dementia, and has a significant impact on their quality of life. People with intellectual disabilities and dementia should have the possibility to grow old in a familiar environment (ageing in place) (Gärtner, 2016; Haveman & Stöppler, 2020). However, it is important to recognise that, unfortunately, institutional services and homes do not always meet the specific needs of people with intellectual disabilities living with dementia. This lack of dementia-friendly environments and inadequate resources poses significant challenges to ensuring that these individuals can age comfortably in place (Dennehy et al., 2022; Haveman & Stöppler, 2020). Therefore, as also stated by the interview participants, the environment ought to be adapted to the needs of people with intellectual disabilities and dementia. This means, for example, providing single rooms and other places of retreat, as well as allowing for smaller groups in order to ensure more mindful care of people with intellectual disabilities and dementia.

5.3 Increased care requirements and emotional burden

As demonstrated in previous studies (Cleary & Doody, 2017a; Janicki et al., 2005; McCarron et al., 2005) the time spent caring for people with intellectual disabilities has increased significantly due to the rise in the number of those living with dementia. There is thus a growing need for additional support for people with intellectual disabilities and dementia in everyday activities (e.g., showering, eating, dressing), especially in the advanced stages of dementia (Sheerin et al., 2020). Formal caregivers stated that they would like to see an increase in staff numbers in order to ensure one-to-one care. Moreover, disruptions in day-night rhythms (Dekker et al., 2021) also increase the amount of care required at night. This, in addition to being subjected to verbal aggression, can be a significant emotional burden for formal caregivers (Furniss et al., 2011).

Furthermore, the study participants report that the mental and physical deterioration of those cared for is emotionally stressful and generates feelings of helplessness, not only among themselves, but also among people's relatives. Thus, apart from raising the amount of care needed, the increasing number of older people with dementia also places a further psychological burden on formal caregivers (Habermann-Horstmeier & Limbeck, 2016; Ryan et al., 2018). This leads to higher absenteeism, higher turnover, and reduced job satisfaction (Kozak et al., 2013), and also decreases the quality of care provided (Rose & Rose, 2005). As determined in previous studies (Klaver et al., 2021; Schwangler et al., 2020), formal caregivers now exhibit an increasing risk of burnout. In order to minimise occupational stress and the risk of burnout, the implementation of health promotion measures in the workplace (Schwangler et al., 2020) is thus recommended. Likewise, social support from superiors (Klaver et al., 2021) and individual or collective psychological support (Couderc et al., 2021) have also been shown to be effective in reducing the risk of burnout. However, according to the legal requirements in Austria (LEVO-StBHG, 2014), such measures are currently not required (and are particularly lacking in Styria).

5.4 Education and training needs

One of the crucial aspects highlighted by the study is the need for proper education and training for formal caregivers. Participants emphasised the importance of specialised training to cope with the complexities of caring for individuals with intellectual disabilities and dementia. Participants stated that the training courses offered on the topic of intellectual disability and dementia are currently very limited, and that they would like all colleagues to have the same level of knowledge so as to be able to provide high-quality care and support.

The provision of such high quality training would also enable formal caregivers to readily identify the signs and symptoms of dementia and thus allow for more timely diagnoses (Cleary & Doody, 2017a). In practise, a lack of knowledge concerning the specific symptoms of dementia in people with intellectual disabilities, can mean that early signs are easily overseen. Dementia symptoms, such as changes in behaviour and personality—which appear earlier and more frequently in people with intellectual disabilities (Lautarescu et al., 2017)—are often misattributed to the intellectual disability itself, or to age-related changes, a phenomenon known as the ‘overshadowing effect’ (Benejam et al., 2020; Mason & Scior, 2004). The early diagnosis of dementia is thus essential in providing adequate health care and in maintaining the quality of life of those concerned (Zeilinger et al., 2022).

5.5 Limitations

As our findings are subject to certain limitations, they need to be interpreted with some caution. As the study was confined to the Austrian province of Styria, it is difficult to generalise the results for the whole of Austria. One major reason for this is the differences in legal regulations prevailing across the individual provinces. For example, care services, care ratios, and associated building regulations may all vary from province to province. To check the reliability of the present study, similar studies would have to be replicated throughout the country.

In addition, the study relied on self-reported data, which may be influenced by social desirability bias or other subjective factors. The use of objective measures or triangulation of data from multiple sources could enhance the credibility of the study.

Finally, it should be noted that the sample was relatively small. Further research with larger samples would be beneficial.