Abstract
Caregivers play a fundamental role in the diagnostic process of dementia in people with intellectual disabilities. However, in many countries they receive no specific training on observing early dementia symptoms. This study investigates which signs formal caregivers interpret as dementia symptoms in people with intellectual disabilities. Thirty semi-structured interviews were conducted with formal caregivers to collect comprehensive reports of their observations regarding dementia signs. Neuropsychological labels were systematically applied to the reported signs, and frequencies were analysed to identify recognition patterns. Results revealed which signs of dementia were most easily observed by formal caregivers and which were most likely overlooked. Cognitive changes were reported more frequently than emotional, body and neurovegetative changes, with most observations occurring during basic care activities. The results emphasise the importance of training on dementia for care professionals when working with older people with intellectual disabilities, in order to improve early detection.
Background
“Intellectual Developmental Disorders” and “Major Neurocognitive Disorder” (American Psychiatric Association (APA, 2022) − hereafter “intellectual disability” and “dementia” − are two seemingly very different conditions. The former occurs in most cases during the early developmental period and the latter at older ages. However, their core symptoms overlap: deficits in cognitive functioning and impairment in adaptive functioning (APA, 2022). Because of this similarity in symptomatology, their comorbidity represents a diagnostic challenge (Nagdee, 2011; Wissing et al., 2022).
Detecting a “significant cognitive decline from a previous level of performance” (APA, 2022, p. 916) caused by dementia besides an intellectual disability is difficult for several reasons. Firstly, the low functional baseline level of adults with intellectual disabilities often makes it challenging to notice a decline in abilities due to the onset of dementia (Bishop et al., 2015; Jamieson-Craig et al., 2010; Silverman et al., 2004). Even when detected, changes due to dementia might be misattributed to the pre-existing disability, a phenomenon well known as “overshadowing effect” (Acton et al., 2024; Benejam et al., 2020; Jamieson & Mason, 2019; Jopp & Keys, 2001; Levitan & Reiss, 1983; Mason & Scior, 2004).
Moreover, there is still a lack of standardised criteria and diagnostic procedures for dementia in people with intellectual disability, which was acknowledged already in 1997 as “the foremost impediment to progress in the understanding and treatment of dementia in adults with intellectual disability” (Aylward et al., 1997, p.152). Diagnostic procedures appear to be particularly challenging because of the different functioning levels among persons with intellectual disabilities (Janicki & Hendrix, 2022; Silverman et al., 2004; Walsh et al., 2015). Therefore, clinicians can often only rely on caregivers’ reports of behavioural changes when attempting to diagnose dementia in a person with an intellectual disability or Down syndrome (Ball et al., 2006; Deb et al., 2007; Elliott-King et al., 2016; Holland et al., 2000; Janicki & Hendrix, 2022; McKenzie et al., 2018; Startin et al., 2016). In fact, caregivers are in a very favourable position to notice changes in the person´s behaviour, thanks to their long-term knowledge and their regular contact with them (Bishop et al., 2015).
Early diagnosis of dementia in people with intellectual disabilities thus depends strongly on personal knowledge (McCarron et al., 2018). The significance of personal knowledge is illustrated by a study showing that people with Down syndrome living within their families are diagnosed with dementia on average 4.5 years earlier than their peers living in institutions (Sinai et al., 2018). People receiving institutional care are likely to have contact with many different formal caregivers – caregivers who are paid to support people with intellectual disabilities (Herron et al., 2020) – over the course of their lives (Bishop et al., 2015; Moran et al., 2013). This makes it difficult for newly involved formal caregivers to recognise any change, as they remain unaware of the highest level of functioning previously achieved by the person in their care (Bishop et al., 2015; Moran et al., 2013). As a consequence, they will assume the person has always behaved in such a manner, slowing down the identification and diagnosis of dementia (Aylward et al., 1997; Koehl et al., 2020; Moran et al., 2013).
Furthermore, caregivers frequently do not receive a formal education on dementia in intellectual disability (Herron & Priest, 2013; Pendl et al., 2024), despite the fact that it is almost three times more prevalent in people with intellectual disabilities and has distinctive clinical manifestations (Strydom et al., 2007). Indeed, early signs of dementia and the progression of the disease for people with an intellectual disability or Down syndrome have been shown to differ significantly from those observed in the general population (Lautarescu et al., 2017). Evidence for this comes from long-term prospective studies on the progression of signs of dementia (e.g., for people with Down syndrome, Ball et al., 2006), as well as studies based on reports of signs of dementia (Deb et al., 2007; Dekker et al., 2021; Holland et al., 2000). In particular, results of a systematic review of studies on the presentation of dementia in people with Down syndrome show that executive dysfunction and Behavioural and Psychological Symptoms of Dementia (BPSD; neuropsychiatric symptoms such as delusions, hallucinations, apathy, anxiety, depression, or disinhibition; Cerejeira et al., 2012) are commonly observed during pre-clinical and early stages in this group (Dekker et al., 2018; Strydom et al., 2010). These signs may precede memory loss and other cognitive impairments. By contrast, these are typically the earliest and most prominent indicators of Alzheimer’s disease in the general population (APA, 2022; Lautarescu et al., 2017). Supporting this, forgetfulness was identified less frequently than reduced self-care abilities and loss of energy in a study screening for dementia symptoms in a sample of 230 adults with intellectual disabilities (Arvio & Bjelogrlic-Laakso, 2021). However, a lack of awareness of the specific presentation of dementia in this population can slow down the recognition of the earliest signs of dementia, thus delaying diagnosis (Furniss et al., 2012; Iacono et al., 2014). This can have severe consequences, as even only a one-year delay in diagnosing dementia in individuals with Down syndrome has been shown to be associated with a 7% increase in mortality risk (Lautarescu et al., 2017; Sinai et al., 2018).
As formal caregivers’ suspicions are often the initial step in a dementia diagnostic assessment in care facilities (Holst et al., 2018; La Face et al., 2026), it is crucial to enhance their ability to recognise and correctly interpret dementia-related change (Dekker et al., 2021; McKenzie et al., 2018). One way to achieve this is through specialist knowledge and training. Many qualitative studies have already reported the need and wish expressed by formal caregivers to receive further training on dementia, as well as education regarding the specific manifestation and the expected trajectory of dementia in people with an intellectual disability (e.g., Acton et al., 2024; Dekker et al., 2021; Furniss et al., 2012; Herron & Priest, 2013; Pendl et al., 2024). Addressing this issue is particularly urgent in a country such as Austria, where the current ageing population of persons with intellectual disabilities represents the first wave of individuals born after the mass murder of children and adults with intellectual disabilities during the National Socialist period (“Aktion T4”; Gabriel, 2016; Haveman & Stöppler, 2021). Owing to the relative newness of this demographic phenomenon, institutions and care concepts still have to adapt in order to accommodate the fragilities and needs of this demographic group (Schachner et al., 2022). However, to our knowledge, formal caregivers in Austria are not currently offered formal training on dementia and intellectual disability as part of educational curricula (Pendl et al., 2024), nor is there a standard procedure in place in care facilities throughout the country to ensure the timely and correct diagnosis of dementia (La Face et al., 2026).
For those reasons, it is important to gain a better understanding of how formal caregivers in Austria currently work to identify potential early signs of dementia in the people in their care, and how they interpret behaviours as potential signs of dementia. To this end, we conducted a qualitative, exploratory study with caregivers from three of the largest care facilities in Styria, an Austrian province. Through semi-structured, face-to-face expert interviews (Meuser & Nagel, 2002), we asked thirty formal caregivers to retrospectively recall signs or changes that had led them to suspect dementia in someone in their care. No predefined recall period was specified; caregivers were invited to report any relevant observations from their past practice. The study aimed to address the following research questions: (1) What are the first signs of dementia in people with intellectual disabilities noticed by formal caregivers without professional training in dementia and intellectual disabilities (e.g., via formal education, certification, or structured training)? (2) To what extent are other specific cognitive, emotional, neurovegetative and body changes (e.g., sleep, appetite and energy levels; APA, 2022), known to be signs of dementia in this population, identified retrospectively? (3) In what contexts of everyday life are these signs most commonly observed?
The study adhered to ethical guidelines, including those of the World Medical Association Declaration of Helsinki (2001) and the Ethics Commission of the University of Graz. Written informed consent for participation in the study and for the publication of anonymised results was obtained from all participants.
Method
Participants
Participants were selected using purposive sampling and recruited from three social service providers for adults with intellectual disabilities in Styria, Austria. To be eligible for the study, participants had to have a minimum of two years’ work experience as formal caregivers for people with intellectual disabilities and one year´s work experience with older people with intellectual disabilities and dementia. The final sample consisted of 30 formal caregivers (n = 25 women) working in day-care centres, sheltered workshops or residential facilities for people with intellectual disabilities. This gender distribution reflects broader patterns in long-term care and support professions in Austria, where female workers are heavily overrepresented (Statista Research Department, 2025). In Austria over 80% of formal care workers are women (CESIE ETS, 2025), and similar imbalance is reported across several countries with up to 90% female representation in long-term care roles (United Nations Department of Economic and Social Affairs, 2023). Further demographic information on the participants can be found in Appendix A. Anonymity was guaranteed by assigning participants a code consisting of the initials of the first and last name of the interviewer, followed by randomly assigned digits.
During the interviews, participants were asked to respond to the questions with one specific individual in mind, a person with an intellectual disability whom they cared for who had either been suspected of having dementia or had received a dementia diagnosis. Of the individuals they reported on, n = 11 had received a dementia diagnosis from a clinician.
Materials
This study employed a guided interview methodology to explore context-specific experiences and individual observations. This approach provided a structured frame while maintaining flexibility for participants to highlight issues most relevant to their practice (Kallio et al., 2016). To this end, an interview guide was developed ad hoc after an extensive literature review and piloted in July 2021 by the second author and the master’s students AH and MT after a feedback loop with the last author. The interview guide comprises eight sections and can be found in full in Appendix B.
After the initial demographic questions, the second section, “suspect of dementia”, prompted participants to spontaneously recall which changes had led them to suspect dementia in a specific person with an intellectual disability in their care. Participants were then systematically asked if they had noticed changes in the following specific areas: everyday practical skills; behaviour, emotions and personality; cognitive functions; body and neurovegetative functions.
Below, we will present the results differentiating between spontaneous recall of the first noticed dementia signs (in paragraph 3.1) and the systematic questioning in each area (in paragraph 3.2).
Procedure
The interviews were conducted between August 2021 and March 2022 by the first two authors and the two master’s students (AH, MT). Participants were informed of the voluntary nature of their participation and gave written consent to the recording and transcription of the interviews, and to the publication of the anonymised results. Twenty-nine interviews were conducted in the offices of participants´ working institutions and one interview was conducted online. The interviews were audio-recorded and lasted between 20 and 100 minutes, with an average duration of 60 minutes.
Data analysis
The interview recordings were transcribed following the guidelines by Kuckartz and Rädiker (2018). Transcripts were not returned to be verified by the interviewees as they were transcribed verbatim. To systematically organise the material into categories, we followed the structured qualitative content analysis by Mayring (2016). We categorised the symptoms mentioned in each interview using a combined approach of deductive and inductive coding (Mayring, 2016) using MAXQDA 2022 (VERBI Software, 2021). The initial codes were deductively drawn based on the structure of the interview guideline (see Appendix C). For example, passages answering the question “Did the person have short-term memory problems?” were initially coded as “short-term memory”. However, some situations that caregivers described as being related to a specific cognitive function were, from a neuropsychological point of view, attributable to others. To address this issue, a second cycle of coding was carried out by psychologists with expertise in neuropsychology (VP and ALF) in order to classify the cognitive changes mentioned in accordance with DSM-5-TR (APA, 2022), ICD-11 (World Health Organization, 2019) and the “Encyclopedia of clinical neuropsychology” (Kreutzer, 2018). This coding process was conducted independently by the two psychologists not blinded, with coding conflicts being systematically resolved in a feedback loop between the two coders (VP and ALF) through discussion, with the aim of reaching interpretive consensus grounded in the data.
Codes were only attributed to text passages clearly indicating a behavioral change and not a stable characteristic of the person. Furthermore, as participants’ responses were not always closely related to the question asked, it was often the case that more than one sign was reported in one paragraph. In such cases, all applicable codes were assigned.
Final code tree and anchor citations a .
aThe categories and subcategories are presented organised by frequency of mention, as in the following results section.
All answers from the spontaneous recall of the first noticed signs of dementia were coded with the ad hoc code “first symptoms”. We then analysed the overlaps between the segments coded as “first symptoms” and the main categories of signs (cognition; behaviour, emotion and personality; neurovegetative functions; bodily functions; and activities and participation) to identify the area in which the initial signs of suspected dementia were most frequently recalled (see paragraph 3.1 for the results).
Moreover, to gain an understanding of the real-life situations in which changes were most often observed, we analysed the overlaps, i.e., the frequencies of co-occurrence in the coded segments, between the code “activities and participation” and all the other signs mentioned (results in paragraph 3.3).
In order to ensure methodological integrity, we drew on the “Consolidated Criteria for Reporting Qualitative Research” (COREQ; Tong et al., 2007) to collect and report our findings. Anchor citations for each category and subcategory of codes are in Appendix D.
Results
Frequencies of mention of symptoms in the five main categories.
aNumber of interviews where signs of this category were mentioned and corresponding percentage of interviews (N=30).
bTotal number of mentions across the 30 interviews per category and corresponding percentage of the totality of coded segments (N=1143).
cNumber of mentions per category overlapping with the code “first symptoms”.
Spontaneous recall of initially observed dementia signs: frequency analysis
Across the 30 interviews, a total of 126 text segments were identified in which caregivers described the first symptoms of dementia observed in the individuals under their care. The majority of these spontaneously reported signs fell under the category of cognition (60%). Changes in behaviour, emotion and personality accounted for 17% of the assigned codes, while 15% were changes in the area of activities and participation. Changes in body functions were mentioned in 6% of the total coded segments, and neurovegetative changes in 2%. See Table 2 for further information.
Frequencies of dementia signs retrospectively recalled following systematic questioning
The following paragraphs report on the additional specific signs of dementia (including cognitive, emotional, neurovegetative, and bodily changes) that were retrospectively recalled by formal caregivers in response to direct and systematic interview questions.
Cognition
Changes in the area of cognition were the signs of dementia most frequently retrospectively recognised by formal caregivers, accounting for 53% of all coded segments. The signs mentioned were attributed to problems in: (a) executive functions, (b) psychomotor functions; (c) memory; (d) orientation; (e) language and communication; (f) perception. Table 3 shows the respective percentage of mentions for each category, including those spontaneously reported as first observed symptoms. The following paragraphs provide a more detailed presentation of both qualitative and quantitative results. (a) Executive functions Summary of frequency of caregivers’ reports of signs and changes among adults with intellectual disability and suspected of dementia within the category “cognition”. aTotal number of mentions across the 30 interviews, and percentage of the totality of mentions within the category “cognition”. bTotal number of codes overlapping with the code “first symptoms”, and percentage on the totality of mentions as “first symptom” within the category “cognition”.
Within the category “cognition”, problems in executive functions were the ones most often mentioned (25% of all coded segments within the category “cognition”), including difficulties in inhibition, working memory and attention, as well as apathy.
As indicators of problems in attention and concentration, caregivers reported signs of distractibility, including misplacing objects and failing to recall their new location, such as placing a remote control in the refrigerator (2AH, Pos. 88). Symptoms of motor and verbal inertia, lack of interest and lack of motivation (e.g., taking a long time to answer a question, or not answering at all; 12AH, Pos. 136) were situations often reported. These are presumably reflections of impaired prefrontal lobes functioning. Regarding problems in inhibition, results showed a high frequency of loss of shame and sexual disinhibition.
Many text passages also suggested that the persons themselves were aware of the changes they were experiencing, included in the category “self-awareness of the disease: Most of the time, they then avoid social contacts. […] Because they realise that we can't handle it. That is the big challenge. So, they already feel the change themselves and are afraid of disappointing the others or overtaxing them. They already feel that very strongly (9AH, Pos. 68). (b) Psychomotor functions
Within the category “cognition”, the second most frequent subcategory was “psychomotor functions” (20%). We identified particularly often situations suggesting an impairment of the ability to perform purposeful, skilled movements, plausibly compatible with a disorder of praxis (62%). For example, caregivers reported that the person had not eaten even though his plate was full, because he did not know what to do or how to use a spoon (13AH, Pos. 42). Caregivers also mentioned difficulties in holding pencils or drinking. However, we could not ascertain from the caregivers’ reports alone whether the motor skills necessary for performing the action were still intact, or whether the problem laid in an inability to recognise the object (agnosia) rather than an inability to plan and carry out an action (apraxia).
Signs of psychomotor agitation (32%), such as being restless or having an urge to move and wander (especially at night) were more often reported than signs of psychomotor slowdown (6%).
Several passages referred to worsening of gait or balance, possibly “gait apraxia”, although we could not exclude that this was due to deficits in elementary sensory, motor, or cerebellar function (Nadeau, 2007), as well as to dressing apraxia, as described in the following text passage: They can no longer manage to dress themselves, if the buttons are small. Tying shoes can no longer be done, they put clothes on inside-out, they forget to wear something or wear two things (9MT, Pos. 48). (c) Memory
The third most often mentioned impaired cognitive function was memory (18%). Here, caregivers reported problems in declarative (episodic, autobiographical and prospective) and non-declarative (procedural) memory.
The most commonly mentioned memory problems were in auto-biographical memory (29%), i.e., memory losses relating to personal information or familiar people. Examples were the inability to recall names of a long-term formal caregiver (1AH, Pos. 80) or forgetting to have a son. Very often caregivers reported situations suggesting problems in episodic memory (27%), i.e., the memory for personally experienced events, occurring in a particular place and at a particular time in the past (Glisky, 2018). For example: “An hour after lunch, she asks for lunch, […] because she hasn’t eaten anything today and now she’s hungry and it’s almost lunchtime and now she wants to eat something” (4MT, Pos. 46-48).
As non-declarative memory we only identified declines in procedural memory (16%), i.e., the long-term memory for the skills involved in particular tasks (VandenBos, 2007). An example is the failure to carry out well-known procedures or working steps: He worked in a sheltered workshop for 30 years. […] Always the same, he knew the system, what he had to do. There are certain procedures that we do over and over again. […] he could no longer remember what he had to do (13AH, Pos. 16).
Only 8% of the coded segments entailed episodes suggesting a failure in prospective memory, the ability to remember to carry out intended actions in the future (Shum & Fleming, 2018). An example was the difficulty to adhere to planned activities, as reported in this text passage: “It doesn’t help if I say: «let’s go to town tomorrow» or «let’s go for a walk tomorrow» […] He would not remember it tomorrow” (2AH, Pos. 89-92). (d) Orientation
Orientation problems, the lack of awareness of place, time, situation, personal identity (Winegardner, 2018), accounted for 18% of all cognitive impairments mentioned throughout all interviews. In particular, impairments in orientation to place (32%) (i.e., the inability to correctly acknowledge the place and the inability to navigate a familiar environment) was often reported by formal caregivers (18%): “He comes back to work, but he doesn’t find you anymore, then he pretends to play hide and seek with you” (4DP, Pos. 34-36).
Time disorientation (30%) was frequently evident in the form of night-time awakenings, requests for breakfast at unusual times of day or improper choices of clothing for the current season: “He put on the jacket although it was 30 degrees outside” (3AH, Pos. 30).
Often caregivers also reported episodes of situational disorientation (20%), in which the person did not understand the situation he was in: “He was, of course, unsure from time to time, because he often didn’t understand what we wanted him to do, what we wanted to do with him” (8AH, Pos. 60).
Personal orientation difficulties (9%) were manifested as difficulty recognising themselves in photos or mirrors, or confusion about their own age: He was 48 and he thought he was 15 and […] I said to him «look in the mirror, who's looking at you there, what do you look like», and he said «a handsome chap», so he really thought he was 15 years old (11MT, Pos. 78). (e) Language and communication
Language and communication changes accounted for 15% of all cognitive changes mentioned. The majority of issues were in verbal production (50%). Recurrent signs were semantic and lexical paraphasia, anomia, lexical automatisms and articulation issues: “Above all, his language has changed dramatically. It was really only word sentences, at most two-word sentences” (8AH, Pos. 74).
Deterioration in written comprehension (reading; 10%) and in written expression (writing; 18%) were less frequently mentioned: When writing, he used to be able to write his own name, but now he can't, he just abbreviates it with letters, so it was quite normal for him to be able to write it before, but not anymore (5DP, Pos. 14).
Problems in verbal comprehension only accounted for 12% of all language problems, while declines in numeracy and calculation skills were the least frequently reported (3%): Calculating is still possible, sometimes on a smaller scale, but not like it used to be, so […] now when she goes shopping, she adds up what she spends, she used to do that all the time, for example, but […] is simply no longer the case (10AH, Pos. 132). (f) Perception
Among perceptual changes (4%), participants mostly reported difficulties in visual perception (90%), for example of food: “She no longer recognised the food, you cut the apple but she then no longer recognises it, or if it’s whole and she thinks it’s a ball” (9AH, Pos. 30), or “For example, she didn’t know whether it was face cream or butter at breakfast. And then she smeared butter on her face” (9AH, Pos. 94). Changes in gustatory perception appeared to be relatively infrequent (10%), manifesting for example as a refusal of previously favoured foods.
Behaviour, emotion and personality
Changes in personality and in expression and valence of emotions (see Table 4), accounted for 14% of the totality of coded text passages. Within this category, internalising symptoms, such as social isolation, sadness and crying episodes, were mentioned most often (42%): I have already received feedback that he has also changed at home […]. That he withdraws […] and seeks less contact with his parents or sister” (7AH, Pos. 48). Summary of frequency of caregivers’ report of signs and changes among adults with intellectual disability and suspected of dementia in the category “emotion, behaviour and personality”. aTotal number of mentions across the 30 interviews, and percentage of the totality of mentions within the category “behaviour, emotion and personality”. bTotal number of codes overlapping with the code “first symptoms”, and percentage on the totality of mentions as “first symptom” within the category “behaviour, emotion and personality”.
Also externalising symptoms (28%) were commonly observed, such as episodes of aggression directed toward the self or others, oppositional and stubborn behaviour: “There has definitely been an increase in aggression, even towards people he used to associate only with positive emotions” (4AH, Pos. 68).
Episodes showing intolerance of distress were reported in 12% of all emotional changes. An example of this was not being able to tolerate a loud environment or becoming easily annoyed by other people: The noise, he doesn't like that at all. And I think that this has changed since dementia. When it's loud, he can't stand it” (11AH, Pos. 268).
Caregivers also reported having noticed broader personality changes, a marked change in the individual’s constitutional disposition (9%): “Within a few weeks, he has shown changes in his personality” (3AH, Pos. 12).
Some caregivers reported examples of neuropsychiatric symptoms (5%) such as delusions (persecution, stealing) and hallucinations: “She strokes the cat that died three years ago” (10AH, Pos. 92).
4% of the coded segments in this category presented episodes emotional lability, rapid and unexplained changes in emotional polarity: “Regular ups and downs, so if he comes in at 8 a.m. and he's in a good mood, it can be completely different again in half an hour” (3DP, Pos. 42).
Neurovegetative functions
Changes in neurovegetative functions, related to energy level, appetite, sleep, consciousness and alertness (Wachholtz, 2013), accounted for 7% of all reported symptoms. The most frequently reported changes were related to energy and drive (47%; appetite changes, weight loss and symptoms of physical fatigue), sleep (35%; night-day-inversions, night awakenings and daily sleeplessness) and in consciousness and alertness (18%; being absent or not cognitively present in a situation), such as in this episode: “He then looks away as if he were in another world” (5DP, Pos. 48).
Body functions
Problems in body functions, which accounted for 6% of all coded segments across all interviews, entailed changes in mobility, incontinence, epilepsy and a general physical decline. With regard to mobility, difficulties were identified in maintaining balance and body position, swallowing, walking autonomously and general physical decline not otherwise specified (61%): “He has become more insecure when walking I would say […] so he often really needs someone to support him and guide him” (12AH, Pos. 140).
Summary of frequency of caregivers’ report of signs and changes among adults with intellectual disabilities and suspected dementia in the categories “neurovegetative symptoms” and “body functions”.
aTotal number of mentions across the 30 interviews, and percentage of the totality of mentions within the category “neurovegetative functions” and the category “physical functions”.
bTotal number of codes overlapping with the code “first symptoms”, and percentage on the totality of mentions as “first symptom” within the category “neurovegetative functions” and the category “physical functions”.
Activity and participation
Frequencies of changes in in the category “activity and participation”.
aTotal number of mentions across the 30 interviews, and percentage of the totality of mentions within the category “activity and participation”.
bTotal number of codes overlapping with the code “first symptoms”, and percentage on the totality of mentions as “first symptom” within the category “activity and participation”.
In particular, within the category ADL (60%) caregivers identified problems in personal hygiene (e.g., going to the toilet), body care (e.g., washing, showering, etc.), dressing, eating, drinking (adapted from the brief Activities of Daily Living Schedule; Jamieson-Craig et al., 2010). Regarding IADL, caregivers mentioned changes in performing household and basic economic transactions, moving using public transportation, and in preparing meals (16%): “When he put his dishes away, he used to put them in the dishwasher, but now he leaves them anywhere” (7AH, Pos. 50).
Changes in “recreation and leisure” (19%) were reported more often than changes arising in the work environment (5%): “When playing cards, you saw what worked really well before with the shuffling, with the counting, and also worked with the holding, which doesn't work anymore” (11MT, Pos. 118).
Figure 1 Provides an overview of the percentage distribution of all mentions across the five categories. Caregivers’ mentions of observed signs and changes (the horizontal bar chart displays the percentages of mentions for each subcategory; bars represent subcategories, grouped by their corresponding higher-level domain).
Analysis of the real-life contexts in which changes occurred
To better understand the everyday implications of functional decline, we examined the specific real-life contexts in which caregivers reported the emergence of changes or difficulties. We were able to identify the context in which changes or problems occurred in only 28% of the coded passages. An analysis of these contexts revealed that the highest frequencies of co-occurrence involved the code psychomotor functions and the following real-life activities: - Eating (n = 13): caregivers described situations in which individuals no longer recognised how to use basic utensils, such as a spoon, and required step-by-step demonstration to initiate and complete the act of eating; - Dressing (n = 9): difficulties were commonly reported in handling clothing, such as fastening small buttons, tying shoes, or correctly orienting garments, leading to wearing clothes inside out or layering inappropriately; - Body care (n = 9): individuals often required substantial assistance with personal hygiene tasks, such as bathing, and benefited from mirrored guidance, where caregivers demonstrated the actions to prompt imitation; - Personal hygiene (n = 6): in some cases, individuals exhibited confusion during toileting routines, for example removing unrelated clothing items or forgetting essential steps, requiring verbal reminders and close support; - Crafts (n = 5): previously enjoyed activities like coloring became challenging, with caregivers adapting materials (e.g., using larger shapes) to accommodate declining fine motor skills and attention.
Issues attributed to problems in executive functions were found in the contexts of eating (n = 10); personal hygiene (n = 7); body care (n = 7); work and employment (n = 4) and crafts (n = 4). Memory problems were instead observed most often in the context of work and employment (n = 7): He had worked in the same workshop for 30 years. It was always the same: he knew the system and what he had to do. After those days, however, he could no longer remember this activity (13AH, item 16).
Orientation struggles were mostly visible in the context of personal hygiene (n = 6): He asks several times where the toilet is and we show him, for example, go straight ahead or left or right, we show him the way and then he finds it, so he doesn't need any support here, he just asks for directions (5MT, Pos. 58).
Frequencies of overlap of changes in each main category and the code “activity and participation”.
Discussion
The aim of the present study was to collect: (1) the first signs and changes noticed by formal caregivers which led them to suspect dementia in the persons with intellectual disabilities in their care; (2) the frequency of appearance of changes in the areas in which signs of dementia typically occur in this population based on existing literature: cognition; behaviour, emotion and personality; body functions; neurovegetative functions (Arvio and Bjelogrlic-Laakso, 2021; Lautarescu et al., 2017; Shimizu et al., 2024; Wissing et al., 2022); (3) the context of daily life in which they are most commonly noticed. This information was retrospectively reported by 30 formal caregivers of people with intellectual disability (regardless of aetiology or severity) in Styria, Austria.
Results show that cognitive changes were most commonly mentioned as the first noticed symptoms of dementia (60%), particularly in attention and concentration, memory, orientation and language. Similar findings have been reported in previous studies, where cognitive changes such as forgetfulness and disorientation more readily raised participants’ suspicion of dementia (Costello et al., 2007; Whitehouse et al., 2000). Given that deficits in cognitive functioning constitute the primary diagnostic criterion for dementia, these results are consistent with established clinical understanding (APA, 2022). Memory and orientation problems are in fact widely recognised hallmark of Alzheimer’s disease (AD; APA, 2022), and although various dementia types exist, each with distinct clinical presentations and progression patterns (Smith & Farias, 2018), AD and its associated symptoms remain the most widely known.
However, as noted in the introduction, in individuals with intellectual disabilities of varying severity, including those with Down syndrome, these cognitive changes may not always represent the earliest signs of dementia (e.g., Lautarescu et al., 2017). It is well documented in the literature that there is a difference in the manifestation of dementia between that in the general population and that among people with a pre-existing intellectual disability or Down syndrome (Lautarescu et al., 2017), as shown by long-term prospective studies on the progression of signs of dementia (e.g., for people with Down syndrome, Ball et al., 2006), as well as by studies using reports of signs of dementia (Deb et al., 2007; Dekker et al., 2021; Holland et al., 2000).
As the latter approach is similar to that adopted in the present study, it is of particular interest for a comparison of results. Among such reports studies, the earliest changes identified retrospectively by caregivers mostly entailed personality and behavioural changes, losses in abilities and Behavioural and Psychological Signs of Dementia (BPSD) such as anxiety, sleep disturbances, apathy, and symptoms of depression (Deb et al., 2007; Dekker et al., 2021; Holland et al., 2000). In our study, on the contrary, among the behaviours spontaneously mentioned by the caregivers as “first symptoms” only 17% were emotional and behavioural disturbances or changes in personality, 6% were body changes, and 2% related to neurovegetative symptoms. In contrast, cognitive aspects were mentioned most frequently. This suggests that the caregivers interviewed may find it difficult to interpret emotional, physical or neurovegetative changes as possible signs of dementia, although these occur relatively frequently and in an early stage in the population examined (Lautarescu et al., 2017). These results are also in line with studies showing that formal caregivers had generally difficulties at judging early and intermediate indicators of dementia (Herron & Priest, 2013). Attributing such changes to dementia seems to be quite challenging for caregivers who have no specific training in this area, and early symptoms may longer remain unnoticed or misinterpreted because of the overshadowing effect (Acton et al., 2024).
Participants in our study, however, when directly asked about changes in other specific areas, did mention a broader pool of signs in the areas of neurovegetative and bodily functions, such as incontinence, (late-onset) epilepsy, fatigue, mobility impairments and physical decline. This might suggest that such changes would not have been attributed to dementia in the first place, or that they actually occurred later in the course of the disease and for this reason were not spontaneously mentioned as first noticed signs. Indeed, neurological and other physical changes are typically associated with the progression and increasing severity of dementia (Prasher, 1995; Robertson et al., 2015).
Regarding the real-life contexts in which the changes were noticed, deterioration in ADL (personal hygiene, body care, eating) was most prominently observed. This finding is consistent with previous research showing a decline in ADL functioning and reported loss of self-care skills among individuals with severe intellectual disabilities and Down syndrome (Evenhuis, 1990; Lai and Williams, 1989; Määttä et al., 2006; Reid and Aungle, 1974). Similarly, in a study screening for dementia symptoms in a sample of 230 adults aged 34 to 80 years, reduced self-care abilities emerged as the most common sign (Arvio & Bjelogrlic-Laakso, 2021). A more recent qualitative study by Dekker et al. (2021) also found that formal caregivers of individuals with severe/profound intellectual disabilities most often reported early signs of change in the context of ADL. In line with these findings, changes in ADL accounted for 60% of all context-linked observations in our sample, despite this not including only people with severe/profound intellectual disabilities.
Differently, problems in carrying out recreational and leisure activities (19%), in Instrumental Activities of Daily Living (16%; cooking, dressing, housework), or working activities (5%) were in our study much less frequently reported. This could be due to the fact that people with intellectual disabilities generally have lower baseline attainment in such areas (Jamieson-Craig et al., 2010) or that they have fewer opportunities to carry out such activities (Kenshole et al., 2017).
It is also possible that some changes and decline in real-life contexts went unnoticed by caregivers due to limited prior knowledge of the individuals in their care. Indeed, the high staff turnover characteristic of many institutional care settings (Kozak et al., 2013) often prevents the development of sustained caregiving relationships, resulting in insufficient familiarity with the baseline functioning of the person. This discontinuity hinders the ability to establish reliable reference points for earlier levels of functioning, thereby increasing the risk that subtle but clinically meaningful changes remain undetected. Yet, declines in ADL, IADL, and in the real-life contexts of leisure and work activities may serve as important early indicators of dementia, emerging up to two years before diagnosis (Jamieson-Craig et al., 2010). It is for this reason that the “National Task Group on Intellectual Disabilities and Dementia Practices” recommends that information on individual life history and functioning be collected over time so that any decline in skills may be quickly noticed also by newly involved formal caregivers (Bishop et al., 2015).
Noteworthy is the observation made by caregivers that individuals with intellectual disabilities often demonstrate self-awareness of the dementia- or age-changes they are experiencing. This awareness can lead to heightened levels of anxiety and uncertainty, which are important to acknowledge and address in the context of care.
It has to be acknowledged that the present study also carries certain limitations. The retrospective nature of the data acquired can limit their objectivity and generalisability. Moreover, formal caregivers often used neuropsychological terms loosely, inaccurately or inappropriately, for example attributing to the “short-term memory” failures which indeed suggested an impairment in another cognitive function from a neuropsychological point of view.
Information about the person with intellectual disability (e.g., age, sex, level of intellectual disabilities, aetiology, or other demographic variables) were not systematically collected to guarantee privacy, as they did not sign any informed consent for the participation in the study. Our results could therefore be biased by the specific composition of the sample of people with intellectual disabilities caregivers reported on.
As not all of the people reported on had been diagnosed with dementia by a clinician, the changes mentioned could be due to other causes. This reflects however the Austrian context, where it is difficult for people with disability to receive a diagnosis of dementia due to a lack of clinical psychologists and psychiatrists and a lack of standardised diagnostic procedures in the field of disability care (Schachner et al., 2022). Even in cases where dementia was diagnosed, the specific type of dementia was not recollected, so we could not be clearly associate the symptoms reported with a specific type of dementia.
We did not report interrater reliability measures for the interviews coding process. However, we ensured the quality of the analysis by reporting qualitative and quantitative results in detail, by describing the process of analysis, by solving through discussion any incongruency in the attribution of codes and by making use of authentic citations, and anchor citations (Braun & Clarke, 2006; Dekker et al., 2021; Elo & Kyngäs, 2008).
The data collection, started in August 2021, was only concluded in March 2022, as the COVID-19 pandemic had an impact on participants’ availability and the context in which interviews were conducted.
The study was conducted as part of a larger project with predefined deliverables and at the time, publication of these specific findings was not the primary objective. Preparing the manuscript at a later stage allowed the research team to prioritise the project’s initial goals. Since the phenomena under investigation are stable and change slowly over time, we believe that this delay did not affect the relevance or validity of the results.
Conclusion and future directions
The results of this study demonstrate the importance of raising awareness among Austrian caregivers of early dementia-related changes in individuals with intellectual disabilities. In fact, our study empirically showed how caregivers’ implicit assumptions about dementia symptoms in people with an intellectual disability do not always correspond with the signs described in the literature. In particular, formal caregivers who lack knowledge of the early signs of dementia might overlook the initial, more subtle dementia-changes in persons with intellectual disabilities, which are not prototypical for dementia in the general population, with negative consequences, as one caregiver poignantly noted during the interview: “If you overlook it, it’s too late. Because the process has been going on for years now, and dementia doesn’t stand still” (2AH, Pos. 30).
Future work should aim to translate findings from previous research and from the present exploratory qualitative study into practical, evidence-based strategies and tools for the early detection of dementia symptoms in people with intellectual disabilities. To achieve this, it is necessary to empirically investigate the natural history of dementia in individuals with intellectual disabilities. Indeed, despite the growing number of studies examining dementia symptoms in this population, there is still the need for large-scale longitudinal studies tracking cognitive, functional and behavioural changes over time in the population with intellectual disability of different aetiologies and severities. Future research should also examine whether the presentation of dementia symptoms differs across dementia subtypes or among individuals from different ethnic backgrounds. Moreover, given the need to enhance reliability and validity in the diagnostic process, further validation studies of existing screening and assessment tools developed for this population are required.
Future efforts should also focus on strengthening the competencies of formal caregivers through professional training programs addressing dementia in individuals with intellectual disabilities. The results from the present study, by recognising and showing the consequences of these existing knowledge gaps among formal caregivers, further highlight the need to improve the training they receive during and after their education. As demonstrated in previous studies conducted in different countries, formal caregivers working with older individuals with intellectual disabilities have expressed a need for more training opportunities (Acton et al., 2024; Dekker et al., 2021; Furniss et al., 2012; Herron & Priest, 2013; Pendl et al., 2024). Importantly, the effectiveness of such training programs should be demonstrated, particularly regarding how they enhance caregivers’ knowledge, improve their ability to recognise early signs of dementia, and positively affect both the quality of care and the well-being of the individuals they support.
By targeting the knowledge and observational skills of caregivers in recognising the early signs of dementia promptly, earlier and more accurate diagnosis would be enabled (La Face et al., 2026). This in turn facilitates individualised support and provision of adequate healthcare (Bishop et al., 2015; McCarron et al., 2005; Oliver and Kalsy, 2005; Zeilinger et al., 2022), with a positive influence on the course of dementia and on quality of life of the person and his caregivers (Chapman et al., 2018; Dekker et al., 2021; Zeilinger et al., 2022). In light of this, improving caregivers’ knowledge of the signs of dementia and their observational skills will make the experience of dementia “more bearable. Make it […] more liveable. Make it […] more human” (2AH, Pos. 30).
Supplemental Material
Supplemental material - «Dementia doesn’t stand still. If you miss it, it’s too late.» early recognition of dementia’s signs in people with intellectual disabilities: A qualitative study with formal caregivers in Austria
Supplemental material for «Dementia doesn’t stand still. If you miss it, it’s too late.» early recognition of dementia’s signs in people with intellectual disabilities: A qualitative study with formal caregivers in Austria by Annalisa La Face, Veronica Pucci, Dominik Pendl, Barbara Gasteiger-Klicpera in Journal of Intellectual Disabilities
Footnotes
Acknowledgments
The authors acknowledge the financial support by the University of Graz.The study was conducted within the project “DigIDe”, funded by the Styrian Chamber of Labour. The authors wish to thank all participants contributing to the study. We sincerely thank the master’s students Arnela Hadziomerovic and Miriam Tuider for their considerable help with data collection.
Ethical considerations
Ethical review and approval were not required for this kind of study in accordance with local legislation and institutional requirements. The research was undertaken in line with the Declaration of Helsinki.
Consent to participate
All participants were informed that participation was voluntary and gave their written consent to being interviewed. Participants were informed about the purpose of the study and the publication of the results. The names of the participants and of institutions and persons mentioned in the interview were replaced with pseudonyms.
Consent for publication
As part of the informed consent procedure, participants agreed that anonymised results from the interviews may be published in scientific presentations or publications.
Funding
This work was financed and supported by the Styrian Chamber of Labour [Arbeiterkammer Steiermark] as part of its digitalisation campaign under the ‘Projektfonds Arbeit 4.0’. This article was published in open access with financial support from the University of Graz.
Declaration of conflicting interests
The authors state that there are no conflicts of interest or competing interests.
Data Availability Statement
Data and material are not available for third parties.
Supplemental Material
Supplemental material is available online.
References
Supplementary Material
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