Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

Abstract Background Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs. Methods Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia. Results Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3). Conclusions Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.


| INTRODUCTION
In the last decades, life expectancy of people with intellectual disabilities has increased even faster than in the general population (Bittles & Glasson, 2004;Coppus, 2013;Evans et al., 2013). Because advanced age is the greatest risk factor for dementia (Alzheimer's Association, 2020), dementia is a growing challenge in intellectual disability care. People with Down syndrome are at a particularly high genetic risk to develop Alzheimer's disease: approximately 75% would developed dementia by age 65 (Wiseman et al., 2015).
Diagnosing dementia in people with intellectual disabilities is complicated due to the level of intellectual disability, (life-long) patterns of characteristic/typical behaviour related to the intellectual disability and the presence of comorbidities, which may be associated with dementialike symptoms (Dekker et al., 2015;Jamieson-Craig et al., 2010;Sabbagh & Edgin, 2016;Zigman et al., 2008). Moreover, it may be hard to differentiate between ageing and dementia. The diagnosis of dementia requires the presence of cognitive and behavioural decline from a previous higher level of functioning, and this decline must interfere with daily functioning (American Psychiatric Association, 2013;Fletcher et al., 2016;Sabbagh & Edgin, 2016;Zigman et al., 2008). However, the more severe and complex the present disabilities, the more difficult the assessment of decreasing skills due to dementia. This is particularly difficult in people with severe or profound intellectual (and multiple) disabilities (Evans et al., 2013;McKenzie et al., 2018).
For this population, there are hardly any validated direct neuropsychological tests and informant-based dementia questionnaires available for (early) identification and diagnosis of dementia (Elliott-King et al., 2016;Esbensen et al., 2017;Fletcher et al., 2016;Hon et al., 1999;Keller et al., 2016;McKenzie et al., 2018). A diagnosis of dementia in this specific population is currently based on multidisciplinary clinical assessment (by experienced clinicians) involving observations, informant interviews and/or screening case notes (Day, 1985;Duggan et al., 1996;Evenhuis, 1990;Määttä et al., 2006;Margallo-Lana et al., 2007;Reid & Aungle, 1974;Sauna-aho et al., 2018). Moreover, studies on dementia symptoms in people with severe/profound intellectual (and multiple) disabilities are scarce because scientific research has primarily focused on dementia in people with mild/moderate intellectual disabilities (Wissing et al., 2021).
People with severe/profound intellectual (and multiple) disabilities have an estimated IQ of less than 35. Besides, they often experience serious health problems and sensory impairments that may adversely affect their functioning (Nakken & Vlaskamp, 2007;van Timmeren et al., 2016). In addition, they often experience profound neuromotor dysfunctions (Nakken & Vlaskamp, 2007). In these persons, it is difficult to differentiate deterioration due to dementia from the severe or profound pre-existing limitations in functioning. Firstly, it is difficult to assess cognitive decline due to the developmental age below 36 months. Although memory changes are indicative of dementia in people with mild intellectual disabilities, decline in daily functioning is more visible in people with more severe intellectual disabilities (Jamieson-Craig et al., 2010). However, people with severe/profound intellectual (and multiple) disabilities often need lifelong support. They have never developed specific skills and have to be supported by care professionals for certain tasks. As a result, such skills cannot be considered as symptoms indicative of dementia (Llewellyn, 2011;Sheehan et al., 2015). Secondly, communication is mostly non-verbal and, therefore, there are no self-reported symptoms (Nakken & Vlaskamp, 2007;Smiley & Cooper, 2003). Thirdly, currently used dementia questionnaires are not suitable for severe/profound intellectual (and multiple) disabilities, and direct neuropsychological assessments are almost impossible due to floor effects (Elliott-King et al., 2016;Esbensen et al., 2017;Fletcher et al., 2016;Hon et al., 1999;Keller et al., 2016;McKenzie et al., 2018). Fourthly, it is difficult to assess dementiarelated decline due to the frequent presence of multiple concurrent health problems (van Timmeren et al., 2017).
Another obstacle for early identification and monitoring of deterioration in people with severe/profound intellectual (and multiple) disabilities is the dependence on observations of informants, such as family members and direct support professionals/caregivers (DSPs) (McKenzie et al., 2018), who often lack necessary background knowledge (Cleary & Doody, 2017;Iacono et al., 2014) partly because information about symptoms and course of dementia in this population has been scarce until now (Wissing et al., 2021). On the other hand, family members and care professionals are often able to give concrete examples of minor signs of decline that they have observed. Until now, this knowledge has been individual-based and linked to one or a few people with severe/profound intellectual (and multiple) disabilities. Therefore, there is a great need for knowledge and education about dementia in this population in daily practice.
An explorative study paves the way for further research on dementia in people with severe/profound intellectual (and multiple) disabilities. This study focused on three practice-based questions: • Why is it important to know if an individual with severe/profound intellectual (and multiple) disabilities has dementia? (question 1) • Which dementia symptoms in people with severe/profound intellectual (and multiple) disabilities are recognised in daily practice? (question 2) • What are training/information needs regarding dementia in people with severe/profound intellectual (and multiple) disabilities? (question 3)

| Study design
This explorative study was based on a qualitative research method using focus groups. Focus groups are group interviews that are not aimed at immediate problem-solving but at identifying practice-based experiences, attitudes and needs regarding a particular problem. Interaction between participants is key (Van Royen & Peremans, 2007).
We held four explorative focus group sessions with 11-13 participants each. To conduct and report this focus group study, we largely followed the method described by Breen (2006), the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2018) and Van Royen and Peremans (2007).

| Participants
Participants were selected based on the criterion that they would have something to say about dementia in people with severe/profound intellectual disabilities, that is, purposive sampling (Rabiee, 2004). Participants were purposefully selected using a twostage procedure. First of all, care professionals and family members with experience with people (≥40 years) with severe/profound intellectual disabilities (established according to dossier and clinical judgement) and showing decline/dementia (with/without Down syndrome; with/without another (e.g., visual or motor) disability) were identified through contact persons at the four care institutions, the research advisory board in which family members and care professionals participated and through the project team members' network (snowball sampling method). In this process, the professions of potential participants were considered to ensure that the focus groups were multidisciplinary (like in daily practice). Therefore, the number of physicians/nurse specialists, allied health care professionals (occupational therapists, physiotherapists and speech therapists), psychologists (behavioural therapists who studied psychology or special needs education), psychological assistants, DSPs and family members were noted. If necessary, additional people were identified. A total of 53 potential participants were identified. This purposive sample subsequently received an invitation to participate by e-mail. Four people could not attend, resulting in 49 participants for this focus group study. These 49 participants were divided into the four focus groups in a multidisciplinary manner, that is, based on care professional versus family member and based on different professions.

| Ethics and consent
The Medical Ethical Committee of the UMCG decided that the Dutch Medical Research Human Subjects Act did not apply to this study (METc 2019/198 2.5 | Data collection 2.5.1 | General participants' characteristics Participants filled in a questionnaire stating their age, sex, highest level of education and relationship to people with severe/profound intellectual (and multiple) disabilities. Care professionals also stated how many years they have worked with people with severe/profound intellectual (and multiple) disabilities in general. Moreover, they answered on how frequently they work with people with severe/profound intellectual (and multiple) disabilities as well as with those with severe/profound intellectual (and multiple) disabilities and decline/dementia, respectively.

| Focus group procedure
Four simultaneous focus group sessions were held, each lasting approximately 2 hours with a 15-min break. Each focus group was led by a moderator with considerable professional experience in intellectual disability care. For reasons of uniformity, the moderators received the same instructions and followed a procedural protocol drawn up in advance (Breen, 2006). Prior to the session, they welcomed participants, checked if participants signed informed consent forms and introduced the topic, the procedure, the rules of play (i.e., focus groups are not aimed at immediate problem-solving but at exploring and identifying experiences, attitudes and needs), the confidentiality and the multidisciplinary group composition. Furthermore, the three research questions were asked in the aforementioned order. The focus group interviews were semi-structured with three open research questions to guide the discussion. Moderators monitored time and ensured that all participants were able to speak.

| Recording and transcription
The sessions were recorded with Tascam DR-40V2 digital audio recorders with an external omnidirectional microphone. Audio tapes were transcribed in Dutch (clean transcription) by the University Translation and Correction Service of the University of Groningen Language Centre. Fillers, hesitations and slips of the tongue were left out.

| Data analysis
Three authors independently analysed the transcripts using a qualitative method of content analysis called inductive content analysis (Elo & Kyngäs, 2008) also known as thematic analysis (Braun & Clarke, 2006) for question 1 and question 3. Following Braun and Clarke (2006), this analysis consists of five steps. In step 1 ('familiarising with the data'), the three researchers independently read the full transcripts. In step 2 ('generating initial codes'), the transcripts were openly coded also independent of each other. In step 3 ('searching for themes'), the three researchers independently interpreted and divided into categories, which were then divided into overarching (sub)themes. This was an iterative process of reading, categorising, rereading, refining and so forth. In step 4 ('reviewing themes'), the researchers met, discussed, compared and refined the division into categories and (sub)themes until they had reached consensus. In step 5 ('defining and naming themes'), phrasing of categories and (sub)themes was tailored to the research question. It is a recursive process, moving back and forth between the steps (Braun & Clarke, 2006). To enhance trustworthiness and clarify participants' opinions and experiences, the thematic description (Section 3) was illustrated with authentic citations (Elo & Kyngäs, 2008). To improve readability, these quotes were linguistically corrected and, where possible, shortened (for instance, by leaving out unnecessary colloquial words) without the original meaning being affected.
For question 2, a qualitative method of content analysis combining aspects of deductive and inductive content analysis was used.
Since dementia symptoms in people with severe/profound intellectual (and multiple) disabilities have been hardly studied in literature (Wissing et al., 2021), this study undertook an exploratory approach to collect symptoms based on experiences in daily practice. To structure the broad range of symptoms, a categorisation matrix (Elo & Kyngäs, 2008) [Dekker et al., 2018), motor changes and medical comorbidities . To improve further interpretation, we categorised symptoms based on the daily contexts in which they are often observed in practice (columns). These daily contexts were inductively analysed and defined based on the participants' descriptions of symptoms. In other words, symptoms in people with severe/profound intellectual (and multiple) disabilities mentioned by participants were coded and categorised in a matrix, which was partially deductively designed (rows consist of cluster of symptoms based on criteria/existing literature) and partially inductively designed (columns consist of daily contexts in which symptoms were seen according to participants).
Finally, the three researchers read the transcripts once more to compare these to the categories and (sub)themes that were ultimately defined per research question. This iterative process of reading, categorising, rereading and refining also involved refining the naming of categories and (sub)themes. Since interaction between participants is key in focus groups (Van Royen & Peremans, 2007) and participants thus respond to each other, this study did not intend to perform additional analyses with subgroups of participants. An integrated analysis was aimed for instead. The original Dutch manuscript with selected quotes was translated to English by the University Translation and Correction Service of the University of Groningen Language Centre.

| RESULTS
To learn more about practice-based experiences, insights and needs regarding dementia in people with severe/profound intellectual (and multiple) disabilities, four focus group sessions were held with 13, 11, 12 and 13 participants, respectively. Each focus group had a multidisciplinary composition including different professions as well as family members. Based on the first analysis of these sessions, we concluded that answers were consistent with each other and saturation had been reached, that is, additional focus group sessions were not likely to provide new information. Table 1 shows the participants' characteristics.
In the focus groups, participants responded to the three questions. Answers are presented below as descriptions of categories and (sub)themes (question 1/ question 3) or by using a categorisation matrix (question 2).

| Question 1: Why is it important to know if an individual with severe/profound intellectual (and multiple) disabilities has dementia?
Thematic analysis revealed two themes ( Figure 1): understanding and the ability to make informed choices.
3.1.1 | Theme 1.1: Understanding Participants stated that they want to know whether an individual has dementia in order to be able to explain problematic behaviour. Psychologist G.: "I am dealing with a man with a severe intellectual disability who is also becoming demented.
He tends to display behaviour that is very difficult to understand. Because we know that he is also becoming demented (…) we are better able to comprehend this behaviour, and there is much more sympathy for it".

| Theme 1.2: Making informed choices
When we categorised the codes and divided categories into (sub) themes, it soon became clear that the majority of reasons were more or less related to the ability to make choices. Firstly, it was reported that choices concerned supporting care, for example, adjusting the aims of support, the way support is provided and the way of contact and interaction. Being aware that an individual also has dementia enables participants, for instance, to choose between an activating, development-oriented way of being supportive and a less development-oriented approach aimed at monitoring the dementia process and putting emphasis on comfort and maintaining skills. A similar consideration was reported regarding the choice between a behavioural way of being supportive, in which a client is talked to about and persuaded to change their conduct ('correcting' the person), and a more monitoring way of being supportive based on the fact that behavioural changes are caused by dementia ('following' the person). Psychologist X.: "[Dementia] means that another approach must be used, in which we do not persuade [clients] to change their behaviour but try to distract them and offer something else". DSP C.: "When do you continue to stimulate and when are you taking over? To decide on this, you have to observe someone all day long: what is the client able to do? (…) it is easier to accept that tasks must be taken over from a client who is becoming demented. In that case, you no longer persist in stimulating and assuming that the client is able to do the tasks".
In addition to choices about support, choices about (medical) treatment were also consistently reported, for example, choices about adjusting a treatment plan and medication use. DSP E.: "We have a client of whom we are not sure whether she suffers from dementia or depression (…) If she suffers from depression, you may give antidepressants which may revive her. However, if she suffers from dementia, you will need to adjust your actions".
The population with severe/profound intellectual (and multiple) disabilities is diverse and includes not only people with severe intellectual disabilities who are (somewhat) able to express themselves verbally and move independently, but also people with profound intellectual and multiple disabilities who are not able to talk and are fully dependent on a wheelchair. Some participants raised the question as to whether the label 'dementia' would actually change the treatment plan for people with the most severe disabilities. The higher the level of functioning, the more likely it seems that the support and treatment can be adjusted. However, the majority of participants stated that they also wanted to know whether individuals with the most severe disabilities have dementia. In addition to obtaining clarity, it was also mentioned that it is not only about the label but also the preceding thorough diagnostic process. Diagnosing dementia requires a proper (differential) diagnostic procedure. This may also prevent misdiagnosis, which may result in clients receiving the wrong treatment. The categorisation of behavioural and psychological symptoms of dementia is based on the BPSD-DS scale (Dekker et al., 2018.
surroundings, others wondered whether you should still introduce changes when dealing with an individual with dementia.
3.2 | Question 2: Which dementia symptoms in people with severe/profound intellectual (and multiple) disabilities are recognised in daily practice?
The reported dementia symptoms in were coded and subsequently categorised using a matrix (Table 2). Thematic analysis revealed that symptoms were generally observed in the context of nursing (for instance, bathing/showering, toilet use, getting dressed/undressed and external care), eating/drinking, mobility/transfers, communication and leisure activities. In addition, a category called 'context-independent' was created for symptoms of which the context was not sufficiently described or that did not seem to be not specifically related to particular contexts.
Cognitive changes were often reported in relation to specific contexts such as nursing, eating/drinking and mobility/transfers. With regard to behavioural changes, symptoms of anxiety were clearly emphasised.
In this study, we identified symptoms based on practical experiences instead of neuropsychological assessment. As a result, a number of symptoms could not be uniformly classified because the description was not specific enough or the specific cause could not be ascertained within a focus group session. An example of this is the repeatedly mentioned loss of object permanence, that is, clients who always (have to) carry a certain object with them, for example, a little doll or a cuddly toy, suddenly lose interest in it. This may be due to amnesia (forgetting the object), agnosia (no longer recognising the object), a decrease in compulsory behaviour (the urge to always bring along the object has now subsided) or apathetic behaviour (having lost interest).
A few symptoms are, therefore, repeatedly described and italicised in   Although that is very nice, they completely lack experience with dementia (…). It is also preferable to have some individual healthcare or nursing (…) background". With regard to learning formats, participants mentioned that training should be practice-based (i.e., concrete, easily manageable) and that it should be possible to learn from colleagues' experiences and by doing experience-based exercises. It was considered desirable to combine various learning formats and to present information in an inviting, for example, visual, manner. It was also stated that e-learnings do not provide the perfect solution, and it is advisable to combine new learning formats with in-person meetings.

| Theme 3.2: Knowledge development and translation
Participants stated that information about dementia in people with severe/profound intellectual (and multiple) disabilities is lacking. More research is needed into, for instance, the development of (standardised) diagnostic tools suitable for this population, such as In addition to developing new knowledge, participants stated that they would like to see available knowledge being made more accessible by joining forces more and promoting collaboration between care F I G U R E 2 Thematic analysis of the answers to question 3: What are training/information needs regarding dementia in people with severe/ profound intellectual (and multiple) disabilities? Figure based on the example in the methodological paper of Elo and Kyngäs (2008) institutions to prevent them from reinventing the wheel independently from each other. It was also considered desirable that information about dementia in the general population and in people with mild/moderate intellectual disabilities should be translated to severe/ profound intellectual (and multiple) disabilities, if possible.

| Theme 3.3: Organisational choices/policies
Increasing the level of knowledge also depends on choices made by care institutions. Participants stated that time and money should be made available to take courses, and that such courses are often optional and without (many) obligations. It was also mentioned that specialised staff can be of added value to an organisation. DSP H.: "I regret the fact that going to specialise is not really rewarded. I think that providing a reward might be a way to stimulate staff a little bit more".
With regard to information needs, it was stated that it is important to systematically monitor clients using standardised methods to improve the transferability of client information. Improvement of multidisciplinary collaboration (also with family members) was emphasised, as well as the importance of reducing staff changes to prevent the loss of knowledge and experience. where is the doctor? Where is the psychologist?
Where is the team leader?" Psychologist G.: "It is very important to adopt a multidisciplinary approach. That it is not only the DSP's responsibility (…) There are so many perspectives that may help to make a good diagnosis".

| DISCUSSION
In this explorative focus group study on dementia in people with severe/profound intellectual (and multiple) disabilities, we examined the (a) relevance of the diagnosis, (b) symptoms and (c) training/information needs. Thematic analysis revealed that participants want to know whether a person has dementia for a better understanding and to be able to make informed choices. The reported dementia symptoms were categorised using a matrix, in which cognitive changes and behavioural changes were the most prominent. With regard to education, participants expressed their need for enhancement of education, more knowledge development and translation and supportive organisational choices/policies.
The results concerning relevance (question 1) are consistent with Australian research that showed that DSPs often struggle to understand whether behavioural changes are deliberate and people with intellectual disabilities can be called to account for them or whether these are dementia-related and, therefore, beyond the person's control (Iacono et al., 2014). Knowing whether someone has dementia enables earlier intervention and more appropriate support and resources (Chapman et al., 2018 (Chapman et al., 2018), concerns were expressed about the impact on the person.
Not only were choices regarding supportive care and treatment emphasised, but also organisational choices. Whether or not it is advisable to move house was subject of discussion, which was also addressed in scientific literature (Chaput, 2003;Heller et al., 2018;Janicki et al., 2005;Llewellyn, 2011). To enable an individual with dementia to continue to live at a familiar location, adjustments must be made to the house, supportive care and interactions (Chapman et al., 2018;Janicki et al., 2005;Watchman, 2003). According to focus group' participants, a timely diagnosis helps to achieve this.
Although the relevance of the diagnosis was frequently emphasised (question 1), answers to question 3 also showed that the knowledge level needed to identify dementia must be vastly improved. The (timely) identification of signs is almost always the task of DSPs. However, participants stated that there is much room for improvement of DSPs' level of knowledge and expertise, as also found in a review article (Cleary & Doody, 2017). Limited knowledge and the early signs of dementia not being identified may result in delayed dementia diagnosis and subsequent decision-making delays (Cleary & Doody, 2017), for example, regarding supportive care and treatment.
Specific training programmes can improve knowledge, understanding, trust and quality of care (Chapman et al., 2018;Cleary & Doody, 2017). The focus group sessions revealed that this is desirable not only for DSPs but also for professionals from other disciplines that play an important role in the diagnostic process.
The lack of scientific knowledge and dedicated diagnostic tools for dementia in people with severe/profound intellectual (and multiple) disabilities (Elliott-King et al., 2016;Esbensen et al., 2017;Wissing et al., 2021) on which to base training programmes, makes it more difficult to improve care professionals' knowledge and expertise.
As a result, care professionals involved with people with severe/profound intellectual (and multiple) disabilities have to rely on their practice-based observations, experiences and anecdotal knowledge.
Participants emphasised the necessity to develop new knowledge and suitable diagnostic tools. It was frequently stated that knowledge should be made more accessible and closer collaboration is needed between regular elderly care and intellectual disability care, a perspective promoted in literature as well (Heller et al., 2018;Iacono et al., 2014). Participants also emphasised that knowledge development and training cannot take place without making organisational choices and adopting policies focused on dementia in people with intellectual disabilities, such attributing more time to DSPs/carers for individual with dementia (Janicki et al., 2005;Mccarron et al., 2005).
To facilitate the development of new knowledge and diagnostic tools, participants shared their practice-based symptoms of dementia in people with severe/profound intellectual (and multiple) disabilities.
In their daily work, they observe decline across different domains.
During these observations, subtle signs are key. The categorisation matrix revealed that cognitive decline and a variety of behavioural changes were observed in particular, which may or may not be associ- Although training needs were asked in the context of dementia, the (sub) themes emerging from the provided answers ( Figure 2) may appear to be applicable to other diseases as well, suggesting that these needs are of essence in good care for people with severe/profound intellectual (and multiple) disabilities in general. For most (sub)themes, the underlying categories specify the needs in the context of dementia.

| Study limitations
Considering the multidisciplinary composition, a first limitation was the fact that participation of a physician or nurse specialist could not be achieved in each focus group. Whereas one unspecialized physician and one nurse specialist participated, involvement of specialised intellectual disability physicians would have been desirable.
Secondly, although the focus on people with severe/profound intellectual (and multiple) disabilities was continuously emphasised, care professionals may have referred to some signs of dementia in people with mild/moderate intellectual disabilities (question 2) because they often provide care to people with different levels of functioning. It is also important to mention the considerable heterogenicity of the severe/profound intellectual (and multiple) disabilities population. A number of symptoms, particularly a decline in speech and ability to walk in people with severe intellectual disabilities, were not widely recognised by care professionals who work with clients who are non-verbal, profoundly disabled and totally dependent on wheelchairs. This underlines the importance of identifying changes within a person by assessing how his/her functioning develops over time. Therefore, a timely baseline measurement of the level of functioning, that is, prior to the occurrence of decline, is essential (Keller et al., 2016).
Thirdly, based on symptoms and contexts mentioned in the transcripts, the categorisation matrix-a simplification of the real situation-was created. However, classification of symptoms was not always straightforward because a detailed description or contextualisation was missing, symptoms appeared to fit into more than one category or a specific cause could not be ascertained within the focus group session. Nevertheless, this is indicative of the struggle faced by participants in daily practice.
A fourth limitation concerned the sudden ending of the audio recording of one of the four focus group sessions approximately 15 min before the session actually ended. However, the fact that some data (question 3) were lost had no impact on saturation.
Finally, in literature there is an ongoing discussion about the necessity to report inter-rater reliability in qualitative research. Braun and Clarke (2013) argue that reliability is not an appropriate criterion for judging qualitative work, because there is no single true meaning inherent in the data. Instead, to enhance trustworthiness of the analysis, the analysis process and the results should be described in sufficient detail and it is advised to provide authentic citations (Braun & Clarke, 2006;Braun & Clarke, 2013;Elo & Kyngäs, 2008), like in this study.

| Future implications
Scientific literature on dementia in people with severe/profound intellectual (and multiple) disabilities has been scarce until now (Wissing et al., 2021), although dementia-related decline on top of severe/profound intellectual disabilities is very complex. Here, the results clearly emphasise the relevance of research on dementia in this population, show obvious practice-based needs for more knowledge and suitable diagnostic tools and provide direction for further research. More indepth studies of symptoms, for example, medical file analysis and interviews with experienced care professionals to obtain a detailed overview of their practice-based experiences are needed. Finally, it is important to focus more on dementia in people with severe/profound intellectual (and multiple) disabilities in training programmes. Development of training products related to this topic must be tailored to the wishes and needs in daily practice.

| CONCLUSIONS
This focus group study examined the (a) relevance of the diagnosis, (b) symptoms and (c) training/information needs. It is important to identify dementia (early on) in people with severe/profound intellectual (and multiple) disabilities to be able to make informed choices. To be able to diagnose dementia, a better understanding of dementia symptoms in this population is necessary. This focus group study paves the way for further study of symptoms. In training programmes, dementia in people with severe/profound intellectual (and multiple) disabilities should be incorporated and the provided information should be tailored to practice-based wishes. People with severe/profound intellectual (and multiple) disabilities are not or hardly able to express the occurrence of deterioration and strongly depend on care professionals. Therefore, improving the knowledge level of these professionals helps to (better) timely identify dementia. As a result, the client's changing wishes and needs can be better responded to by making informed choices.