“That She Is Unique Is Clear”: Family Members Making Sense of the Uniqueness of Persons with Dementia and Persons with Profound Intellectual and Multiple Disabilities

Abstract

Family plays an important role in person-centered care (PCC) within long-term care facilities, especially for individuals with high-support needs such as dementia or profound intellectual and multiple disabilities. The goal of PCC is to live a meaningful life by, for instance, acknowledging personhood. Uniqueness is an important attribute of this personhood. Family members contribute significantly to PCC by sharing their knowledge of their relatives’ uniqueness. This study explores how family members interpret and give meaning to the uniqueness of their relatives with high-support needs through interpretative phenomenological analysis. Six participants participated in a semi-structured interview. The first research question was about what the uniqueness of their relatives is and resulted in different themes: who she used to be, who she is now, who she will become, change, and (importance of) family ties. The second research question was about the discovery of this uniqueness and resulted in the following themes: daily search, and discoveries from childhood. How this uniqueness comes to the fore, the third research question, brought forward themes such as care provided by family members, shaping care in the care organization, and importance of place. This study demonstrates that family members can describe the uniqueness of individuals with high-support needs and help shape PCC.

1. Introduction

Families play an important role in person-centered care (PCC) within long-term care facilities (Wei et al. 2024). PCC underscores that seeing the whole person in care is important (Eklund et al. 2019; Kitwood 1997), and involves acknowledging individuals as unique beings in the care and support they receive (Byrne et al. 2020; Kitwood 1997). It focuses on empowering them to have control over their care and support and fostering meaningful partnerships with their caregivers (Byrne et al. 2020). PCC focuses on different dimensions, such as physical comfort, emotional support, and continuity of care and support (Hakobyan et al. 2020). This shows that PCC is not only applied to care, but also to the support a person receives. The goal of PCC is to live a meaningful life, which can be achieved by understanding who a person is (Eklund et al. 2019), and acknowledging their personhood (Gagnon and Marcotte 2025; Kitwood 1997).

Personhood is defined by Kitwood (1997) as: “a standing or status that is bestowed upon one human being, by others, in the context of relationships and social being. It implies recognition, respect and trust” (p. 8). The definition of Kitwood shows that personhood is something relational. Nowadays, there is a diversity of meanings and interpretations of the concept of personhood (Gagnon and Marcotte 2025; Hennelly and O’Shea 2021). Gagnon and Marcotte (2025) did ethnographic research and provided four meanings of personhood: being an autonomous person, a vulnerable person, a unique person and a good person. Uniqueness as attribute of personhood is not only found by Gagnon and Marcotte (2025), but Manthorpe and Samsi (2016) also state that personhood reflects the uniqueness of a person.

When family members visit their relative in long-term care facilities, they often spend quality time together (Crettenden et al. 2014). However, they are also involved in the care and support their relative receives. The involvement of family members in PCC encompasses visiting their relative, engaging in different care activities, planning and monitoring care and providing social, emotional, financial and advocacy support (Wei et al. 2024). Therefore, family members play a huge role in shaping the care and support and their contribution should be acknowledged and taken seriously. When people cannot communicate in conventional verbal ways and have high-support needs, family members become even more essential contributors to PCC, offering valuable insights into who that individual is (Gjermestad 2017). For example, family members often have tacit knowledge about their relatives, which is the capacity to understand the signs of their relative and the feeling of just knowing what their relative needs, means or experiences (Kruithof et al. 2024). In addition, the narratives shared by family members are a way to hold that person in identity (Kitwood 1997; Lindemann 2009). All this knowledge can be used in the co-creation of PCC (Hakobyan et al. 2020).

Two exemplary groups of people with high-support needs, who communicate in minimally verbal, pre-symbolic ways, are people with profound intellectual and multiple disabilities (PIMD) and people with late-stage dementia. Both groups rely heavily on the care of others for nearly all aspects of their lives and are unable to communicate in conventional verbal ways their situations, wishes, needs and uniqueness. Individuals with PIMD experience significant intellectual and motor impairments, often accompanied by additional disabilities (Maes et al. 2021). Dementia is diagnosed when general cognitive impairment, beyond just memory loss, affects the daily functioning of a person (Hugo and Ganguli 2014). Even though the disabilities of people with PIMD are lifelong and generally more static compared to the group of people with dementia, both groups have the same support needs and both of the involved care and research sectors can learn from each other (Heller et al. 2015). There is limited understanding of how uniqueness of these people with high-support needs is perceived by individuals with PIMD or dementia themselves and their social environments. By involving both groups in this research, the similarities and differences between the groups can be a starting point for a possible form of PCC than can be applied to multiple groups of people with high-support needs.

Previous research has shown that the social environment, including family members of people with PIMD and people with dementia, defines personhood based on seven elements, which differ per group (Nieuwenhuis et al. 2025). In the group of PIMD the elements of personhood were capabilities, preferences and experiences, social relations, life story, profile of personal characteristics, communication and basic safety. For the group focusing on dementia, these elements were identity, vulnerabilities, preferences, personal approach and interaction, experience of the social context, social background, and vision of life. In addition, Hennelly and O’Shea (2021) conceptualized having interests, preferences and traits, life course experience, being social, and the significance of family and place, as core elements of personhood. In all the different conceptualizations, relationships play an important role, as seen in themes such as communication, social relations, social background and significance of family. This is not surprising, as humans exist within a complex web of relationships (Smith et al. 2022). It is within and through those relationships that the uniqueness is stressed, as a part of the personhood of that person (Gagnon and Marcotte 2025).

Combining the importance of family members in PCC and their knowledge about the uniqueness of the person with high-support needs, it is relevant to know how they view the uniqueness of their relatives. Family members act as advocates for their relatives with high-support needs (Kruithof et al. 2024; Wei et al. 2024), making them important for enhancing PCC and, consequently, improving the quality of life for these individuals (Davies et al. 2023). There is, however, limited knowledge about how family members perceive the uniqueness of their relatives, how they have come to recognize this uniqueness, and how they see it reflected in the care and support provided. This study aims to explore how family members interpret and give meaning to the uniqueness of their relatives with high-support needs. To address this issue, the following research questions will be answered:

• What is, according to family members, the uniqueness of the person with high-support needs?
• How has this uniqueness been discovered?
• How does this uniqueness come to the fore in the care situation?

2. Methods

2.1. Study Design

To answer the research questions interpretative phenomenological analysis (IPA) was used. This qualitative research approach attempts to explore the lived experience of an individual combining phenomenology, hermeneutics and the principle of ideography (Spiers and Smith 2019). IPA is often used on relatively small, homogeneous samples and is ideally suited for investigating dynamic processes, making it an appropriate approach to answer this study’s research questions.

Participants

Six different care organizations in Flanders, Belgium, participated in a larger research project on person-centered care and people with high-support needs, which this study was a part of. In the current study, the family members closest to the person with high-support needs, according to the care organizations, participated. The participating care organizations were recruited with help from the advisory board of this project (consisting of three expertise centers focusing on PIMD or dementia). Those expertise centers distributed an invitation for an online seminar explaining the research project and introducing the research team. Following the seminar, care organizations interested in participating could reach out to the researchers, and an introductory meeting was arranged. Once the care organizations decided to participate, they discussed which residents met the inclusion criteria (having high-support needs, dementia or PIMD, communication in minimally verbal and non-symbolic ways and living in the care organizations) and contacted the family members of those residents for an interview. All the contacted family members agreed to participate in this interview.

The sample included two mothers and one father of persons with PIMD and two daughters and one husband of persons with dementia. They were all (one of) the closest relatives and bore the greatest responsibility for informal care and contacts with the care organization. Two of the persons with PIMD still went home on the weekends, where the two mothers provided most of the needed care and support. All the other relatives of the participants resided fulltime in the care organization, and the participants visited them at least twice a week (three participants) or every day (one participant). All participants were Belgian, and their native language was Dutch. The quotes in this text are translated, whereby the authors stayed as close as possible to the literal translation. If necessary, minor adjustments were made to the quotes to increase readability. Additional information about the participants and their relatives can be found in

Table 1. Description of sample.

Participant	Respondent			Family Member with PIMD/Dementia
	Age	Gender	Relationship	PIMD or Dementia	Age	Gender	Additional (Medical) Problems	Years Residing in Current Care Organization
1D	65	Female	Daughter	Dementia	91	Female	Problems with motor skills	5
2D	61	Female	Daughter	Dementia; Alzheimer’s disease	85	Female	Problems with motor skills	6
3D	85	Male	Husband	Dementia	83	Female	Problems with motor skills, small decline in hearing	5
4P	50	Female	Mother	PIMD; Rett syndrome	28	Female	Problems with motor skills, epilepsy	5
5P	65	Male	Father	PIMD	34	Female	Problems with motor skills, hemiplegic, epilepsy, blind	3
6P	55	Female	Mother	PIMD; Rett syndrome	25	Female	Problems with motor skills	4

.

2.2. Data Collection

To collect data on how participants make sense of the uniqueness of their relative with high-support needs, a semi-structured interview was used. The interview protocol consisted of eight open-ended questions, focusing on who the participants and their relatives are, describing the uniqueness of the relatives, how the participants discovered this uniqueness, how the uniqueness of their relatives was integrated into daily life and care, and their dreams for integrating this uniqueness into the lives of the relatives. Examples of questions include: ‘can you describe what makes [name relative] unique and distinctive?’ and ‘how did you discover the uniqueness of [name relative]?’ To encourage the participants to discuss their emotions and thoughts, prompts and probes were used, such as ‘can you tell me more about that?’ and ‘what thoughts are going through your mind now?’ To prevent steering towards answers and to allow openness to all ideas from the participants, it was decided not to provide a definition of uniqueness in advance. However, it was briefly explained what PCC is and that the uniqueness of a person needs to be known for this. The interview protocol was used as a guide, so the questions were sometimes asked in a different order or adapted to the participant’s story (Spiers and Smith 2019). If necessary, the protocol was adjusted after an interview, for example, if new topics came up or if questions were not completely clear, as is common in an IPA approach (Smith et al. 2009). The interview protocol was reviewed by a researcher experienced with IPA (second author) and tested in a pilot interview with a mother with a child with intellectual disability to see if the questions were clear and useful.

Before the start of the study, ethical approval was given by Ethics Committee Research UZ/KU Leuven in July 2022 (S66592) and the study was preregistered on Open Science Framework (https://osf.io/ft4az, accessed on 12 June 2025). To arrange the interviews, the participants were contacted by the researcher via e-mail or by the care organization, depending on the preference of the participants and care organization. One participant chose her family home as interview location, while the other participants chose the care organization. The care organizations made sure there was a quiet room with minimal disturbances to do the interviews. Before the start of the interview, the whole research project and informed consent was explained in accessible language. The participants also answered a short questionnaire about the demographics of their relatives and themselves, such as their age and the languages they speak. Afterwards, the audio-recorder was started. The average duration of the interviews was one hour and twenty minutes. The shortest interview was fifty minutes and the longest one hour and 46 min. Verbatim transcriptions were made of those audio-recordings. Notes about striking non-verbal expressions were included in those transcriptions.

2.3. Data Analysis

The data was analyzed following the six steps described by Smith et al. (2009). The process of analysis was not done linearly as described below but as an iterative process in which the researcher moved back and forth between the steps. First, the researcher immersed herself in the data of one participant, getting familiar with the data and making that certain participant the focus of the analysis. Second, descriptive (describing the content of the answers of the participants), linguistic (describing the specific language use of the participants) and conceptual (making interpretations and describing ideas of the researchers about what the participants had said) comments were written next to the text producing a detailed set of notes and comments. Third, emergent themes were identified based on the notes and comments from the previous step. Fourth, connections were made between the emergent themes. Fifth, the researcher moved to the next case starting the process again. Sixth, all the different cases were compared, looking for patterns across cases. During this step, themes were renamed, and higher order qualities were identified, resulting in themes and subthemes.

In IPA, a double hermeneutic is involved where the researcher attempts to understand the participant’s interpretation of the world (Smith et al. 2009). Thus, the researcher makes an interpretation of the interpretation of the participant. Therefore, it is important to acknowledge our positions in this study, as the researchers’ beliefs, backgrounds, and ideas about the topic actively influenced the interpretation of the data. The first author, who did the interviews and took the lead in analyzing the data, is a PhD student focusing on PCC and personhood for individuals with high-support needs. She has experience working in various care organizations, mainly with people with intellectual disabilities. The second author, who was a peer-auditor during the analysis and provided feedback in every stage of this study, is a postdoctoral researcher specialized in attachment relationships and children with PIMD. She worked on multiple studies using IPA. She read all the transcripts, notes, emergent themes and within-case analysis, and discussed them with the first author to enhance the interpretations of our findings. The third and fourth authors are the supervisors of this PhD project. The third author is an assistant professor specializing in the education of children with special needs, while the fourth author is a professor in the field of support for individuals with intellectual disabilities. Both have extensive experience in research and teaching related to the care of persons with PIMD. They had an advisory role in this project, providing feedback during every stage of the study. Our research and perspectives are influenced by the Western European context in which we were raised, educated, and currently work. In this context, PCC and personhood are often focused on individualism and self-determination (Smith et al. 2022). Additionally, the organization of the Belgian care system, including the priorities in care, the role of the family, lack of staff and the financing, has significantly shaped the way this research was conducted. For example, PCC is nowadays mentioned in different care policies, which made care organizations more interested in participating, while the lack of staff made them hesitant to participate.

3. Results

The research questions were used to structure the findings. Each research question has multiple themes and subthemes. An indication of which participant contributed to the (sub)themes can be found next to the name of the (sub)theme, in which D indicates the group focusing on dementia and P on PIMD.

3.1. Research Question 1: What Is the Uniqueness of Persons with High Support Needs?

The themes discussed in this paragraph highlight various factors that describe the uniqueness of individuals with high-support needs (Figure 1). Participants reflected on the past of their relatives, seen in the theme ‘who she used to be’, including significant life events; their present, seen in the theme ‘who she is now’, including preferences, awareness, and communication; and their future, seen in the theme ‘who she will become’, involving fears and dreams. These themes were shaped by the changes the individuals went through, which is described in the theme ‘change’. A theme influencing all the others was ‘(importance of) family ties’, which included subthemes chronic sorrow, and the happiness and love experienced within the relationship.

3.1.1. Who She Used to Be (D1, D2, D3, P5, P6)

When the participants talked about the uniqueness of their relative with high-support needs, they often mentioned characteristics and relationships the person had, and the things they did in the past, for example, their job or hobbies. Participants frequently touched on norms and values, with some participants noting that certain attitudes, like disapproval of divorce or not going on holiday due to work, were reflective of those earlier times. One participant (D2) emphasized that her mother always conformed to the wishes and expectations of others and described her as very ordinary.

No outlier, neither to the low nor to the high. How should I put it? Of uh… not that you say ooh that’s a smart one or that was a uh…, yeah, very ordinary, loving mum.

(D2)

When talking about the past, the parents of the persons with PIMD often mentioned traits that they endorsed during the upbringing of their children that they still observe today, such as being curious. In contrast, the participants with relatives with dementia frequently focused on lost characteristics, emphasizing who the person was before the onset of dementia. It was notable that they often spoke in the past tense to emphasize that those characteristics are no longer there. One participant (D1) illustrated this clearly, stressing that it was all in the past.

(Researcher:) And you’ve mentioned the family several times now and so on. Is that important to her?

(Participant:) That was important eh. Family was important.

(D1)

Important life events (D1, D2, D3, P4, P5, P6): Almost every participant mentioned important life events in the lives of their relatives, such as moving to the care organization. However, two participants (D1, D2) talked about life events that were, according to them, major turning points in the lives of their mothers. For example, it was about the loss of a loved one (D1), or about a divorce, which had made the mother happier in the end (D2).

Yes. He died then yes. But… always thinking about… yes. About his wife eh. Yes. We always said he’s going to take care of her until he collapses, that’s what they say here. And… it was like that. It was like that. Yes. And now it’s our turn to do our bit.

(D1)

Yes, then she decided eh. Also told my father, look, I’m going to live in [place]. They lived a bit further here, a few kilometers. But in those days, it was a lot of those same-aged people, 55 is still a bit young, but those people started about my house being too big, I’m going quietly to the city, we can get a little flat, short to everything, and then she said I’m going to live in a little flat. My dad thought ah yes, where? He thought together eh. Then she said I’m going to live there alone. Uh… Yes, then they… Did they break up heh.

(D2)

3.1.2. Change (D1, D2, D3, P5, P6)

Participants discussed the changes in their relatives over the years, attributing these changes to the disability or illness they have. The changes they talked about were mostly changes in physical or cognitive functions. Not one participant mentioned substantial changes in personality traits, even though the participant of a relative with dementia talked about personality traits being lost. Talking about change was particularly pronounced among those with a family member with dementia, likely due to the visible and characteristic deterioration associated with the illness (D1, D2, D3).

Before, she was not in the wheelchair and then in a small one and then she was in the big wheelchair. She couldn’t even swallow anymore. She was very crooked, no longer swallowing, uhm… but at two months my mother had gone from dementia stage one to stage four in my eyes.

(D2)

(Researcher:) Can you tell me more about who [name wife] is? (Participant:) Whew. How am I supposed to do that? I have, yes, in the last ten years, what should I say, more than ten years… Yes, now it’s about twelve years ago that I… that all that started, so uh… that I didn’t have a grip on her anymore, on [name wife] as I used to know her. At night she got up at two o’clock. Then she went out into the street. I’ll never forget it during carnival. 2017 was that time. I was so scared eh.

(D3)

However, the decline in physical and cognitive functions was also a significant theme for parents of individuals with PIMD, particularly in relation to changes due to epilepsy or Rett syndrome (P5, P6). One mother (P6) also noted changes as her daughter grew up and went through puberty, while a father (P5) mentioned his daughter changed physically when getting older.

Uhm… We used to take her everywhere. We have the impression, in the last few years, that’s become a bit more difficult. That she needs more sleep, uhm… That, that the rhythm of the day sometimes becomes more challenging.

(P6)

3.1.3. Who She Is Now (D1, D3, P4, P5, P6)

When participants discussed who their relative is now, they often began with a general description, mentioning characteristics such as being calm (P4) or cheerful (D1), or the activities they still engage in, like folding a scarf (D3) or swimming (P4, P5, P6). In the group of people with dementia, these descriptions were often related to who the person was before the onset of dementia. Notably, one participant (D2) did not discuss who her mother is now, but rather focused solely on what had been lost.

The shell is still my mother, and I can still see in her eyes that she is my mother, but that is actually all I see of my mother.

(D2)

One of the mothers (P6) of a relative with PIMD mentioned the mother-daughter relation as an important aspect of who the person with PIMD was, while a father (P5) of a woman with PIMD almost entirely defined her by the syndrome she had and the care she required, making her uniqueness evident for him.

Yes, that she is unique is clear, so uhm… [Researcher:] Why is that clear? [Participant:] Yes, hahaha. I don’t think there are many… With that syndrome, there aren’t many people. So yes, she is different from the other residents. The others can do much more. She is the only one who really needs all that support.

(P5)

After providing general descriptions of their relatives, participants often elaborated on various aspects of those relatives. These aspects were categorized into three subthemes: preferences, awareness, and communication.

Preferences (P4, P5, P6): The parents of the persons with PIMD often talked about the preferences their relative has and focused on the things that make their children happy. Different types of preferences were mentioned, such as food (P4, P5, P6), music (P4, P5, P6), activities (P4, P5, P6), stuffed toys (P4, P6) or the weather (P5). Preferences sometimes also seemed to reflect the values of the family.

Uh… we place quite a bit of importance on, yes, that she is well-dressed, that her hair is nicely groomed, that she herself is well-groomed. Uhm… there’s a joke in the family that my grandmother thought it was important for us to wear earrings, things like that. And yes, from a young age, it was the same with [name daughter], and she received many compliments about it. Wow, [name daughter], you are beautiful. Now, she is also a beautiful girl. Uhm… yes, she loved that, and now you can see that she still likes nice clothes and such.

(P6)

Discovering those preferences had often been a process of trial and error and still the participants were not always sure if their relative truly preferred something.

Yes, whether she really enjoys it, we never know. Whether she really likes it, yes, she just goes along with everything.

(P4)

Participants with family members with dementia told less about the preferences their family member had nowadays and the search for those preferences. They often lingered in generalities and current preferences were hardly, if at all, discussed.

Awareness (D3, P4, P5): In both groups (PIMD and dementia) awareness took an important role in describing who they are. This awareness was about, for example, what they perceive from their surroundings, or whether the relative can interpret certain situations. A husband (D3) talked about his wife with dementia, who is constantly sleeping and does not seem to notice much in the environment.

Shall we go for a walk? She says walk. Then uh… I take her to the next big building, uh…, the lounge there, I sit down. She sits next to me, sleeping. Occasionally, she lifts her head and looks at me, then she smiles and then [he pretends to sleep]. Otherwise, I leave her alone, you know. Because you can’t make contact with her at that moment, and then yes, she just lies there. Always sleeping, sleeping, sleeping.

(D3)

One mother (P4) stated that her daughter with PIMD understands (emotional) situations, but directly questions this understanding, by expressing an uncertainty about the awareness of her relative.

So yes, those are the kinds of things where you see, hmm, she does realize more… and those moments when everyone is a bit sad, she is also a bit more tense. Like, what should I say? She seems to feel it too. Yes, like, she was, yes, she was a bit resistant, that’s not well said, but yes, she felt that something was off. Those were the moments, that period, yes, that she wasn’t quite herself. How she used to be, you noticed… don’t ask me how, I don’t remember, but you noticed that she was a bit more angry and hmhmhmhm, yes, yes. Like that. Those kinds of things. So there are also moments when you know… something like okay, yes, they have feelings, but yes, what does she understand? So yes, but hahaha. Maybe also still… feelings, yes.

(P4)

On the other hand, a father (P5) stated that his daughter has no self-image and does not understand situations or concepts such as what a mother is.

And she realizes very little. She has no self-image, [name daughter], with the problem around her limitations. On one hand, it’s sad how limited she is, but on the other hand, she is not unhappy because of her situation. We think she misses a lot, but she doesn’t know that. She doesn’t know that she, yes, is not mobile, that she can’t do things, that she can’t have a relationship, that she… she doesn’t know any of that. Does she have an image of us? We are familiar voices and familiar actions, but she doesn’t know what ‘mom’ is. She doesn’t know that. It’s a bit, yes, not to dwell on it too much, but she doesn’t actually know that.

(P5)

Communication (D1, D2, P4, P5, P6): All the participants stated that their family members communicated in a minimally verbal way, expressing themselves through their facial expressions or body posture. This communication is important, because in this way the relatives show who they are and what they need and want (P4, P5, P6). Especially when other people make contact, most relatives respond by smiling (D1, P4, P5). Over the years, the participants also found their own unique ways of communicating with their relatives, for example, by seeking physical contact (D2) or looking at pictures (P6).

Yes, she can still show some emotion, yes. She can wink, and she winks back so we have a little connection. Or sometimes I touch her hands, or place my hands against hers, and she responds a bit. But yes, my mother is still here. She is here, but she is not here anymore.

(D2)

Yes, that gives… I also have an iPad for her, where I put photos on, because for me and her it’s a kind of communication tool. Through photos… you see certain things in photos. Then you can talk about them, like ‘Oh, did you swim here?’ or ‘Ah, did you do this here?’ And then, that creates communication. That, that, that creates words, whereas if you don’t know things or, yes, you can’t ask her. She can’t tell me and I can’t ask her if it’s not completely clear.

(P6)

3.1.4. Who She Will Become (D1, D2, P5, P6)

Most participants talked about their vision on the future of their relatives, but it differed between the two groups if it was either a fear for the future (D1, D2) or if they had dreams for the future (P5, P6). This difference seemed to be explained by the differences between PIMD and dementia, where participants talking about dementia often mention the decline of the relative, while who they are remains much more stable for people with PIMD. In the PIMD group, participants talked less about saying goodbye and losing things, which is a more important topic in the dementia group. In addition, the parents (P5, P6) of the persons with PIMD reflected on how their lives would be if their daughter did not have a disability.

Yes, I think, uhm… if she had been 100% mentally sound, she would have had more of my character. My wife is much calmer, much more tolerant. I can be quite a hothead sometimes. Uhm… I think she would have had some temperament. Yes, definitely. Energetic. She is also quite robustly built.

(P5)

We always said, wow, if she had developed normally, that would have been… that would have been quite something. It would have been quite intense. There would have been some serious clashes, yes.

(P6)

Fear of the future (D1, D2): Caring for their relative (D1, D2, D3) seemed to bring a certain structure to the life of the participants. The uncertainty about the course of the illness and the prospect of the death of their relative created fear for the future (D1, D2). In addition, the participants were also afraid of losing other parts of their relative when their health would decline. The participants reflected on how it would be to lose their mother (D1, D2), and one of them thought she will come to a standstill on the day that her mother is no longer there (D1). One participant (D2) also feared that she would get dementia, and she constantly compared herself to her mother.

I am physically healthy, uh… Sometimes in the back of my mind, I hope I will never get it. But yes, if it happens, we will deal with it then. For now, we will just enjoy everything we have and do as much as possible.

(D2)

Dreams (P4, P5, P6): Participants shared various dreams regarding their relatives with PIMD. For instance, one participant (P5) hoped that the health condition of his daughter would not worsen and that she would remain happy. Some participants (P4, P5, P6) expressed a desire for improved communication. One mother (P6) mentioned her wish for her daughter to use a communication device, although previous attempts had been unsuccessful. Despite this, she continued to dream of ways to enhance the self-determination of her daughter and hoped to find a solution in the future. In addition, she mentioned some parenting goals, for example, teaching her daughter to consider her surroundings, because she will always have to live in a group.

Also, she needs to consider her surroundings. I find that important. Uhm… as long as we can provide care for her, it’s our choice what we give, but you know… here she has to live in a group, she also has to consider others. I always found that important, because you can do everything for her, but that’s not always good. She shouldn’t become spoiled, haha. I don’t want that.

(P6)

3.1.5. (Importance of) Family Ties (D1, D2, D3, P4, P5, P6)

Each participant was among the individuals who are most closely related to the person with high-support needs, playing a significant role in their lives. As family members, it was not surprising that the importance of the family ties were central themes in their stories, making up an important part of the uniqueness of the person. This uniqueness always seemed relational. This sense of family was interconnected with all other themes and significantly influenced them, particularly in how participants viewed their family member. Thus, the family ties were crucial for the narratives about the uniqueness and how this uniqueness was viewed. It shows the interdependence on each other in defining uniqueness. Participants also mentioned other family members who played important roles in the life of the person with high-support needs, such as children, siblings, and grandparents. Several participants highlighted the importance of these family ties for their relative (D1, P6) or discussed the complexity of their family situation (D2, P5). The relationship between the participant and their relative was characterized by two subthemes, namely the chronic sorrow, and the happiness and love in this relationship, which influenced how the relative was seen and described by the participants.

Chronic sorrow (D1, D2, D3, P4, P5, P6): Chronic sorrow includes mourning for what is not (anymore) and the related acceptance process. This was seen in two different ways, depending on the group. In the dementia group it was more about an experience of loss, in which the participants lost the person that once was (D1, D2, D3). They often talked about the process they went through up until this point. The two daughters (D1, D2) stated that they were happy whenever their mother is happy, although a certain form of sadness and grief was also constantly seen in their stories.

You saw that evolve. It hurts. It hurts. Because we also… our weekly outings together to the hairdresser and shopping for clothes, having a cup of coffee. And yes, enjoying life. That… you can’t do that anymore. … Yes.

(D1)

In the group focusing on PIMD, the mourning was more about the things that never happened. The participants often referred to ‘normal’ situations (P4, P6) or compared their daughter with PIMD to their neurotypical children (P4, P5, P6). They were aware of their different position in the social context (P5, P6), having a child that was an adult but still needed care and support. However, the participants stated that it also made it easier to put things in perspective and not worry so much about small things (P4, P6). Nonetheless, every participant mentioned that they wished their child did not have disabilities (P4, P5, P6).

Well, we had hoped for a normal family, I would say. Yes, that didn’t happen, well, it didn’t turn out that way. Not that I would complain about it, no, not at all. It is what it is, and I think we have all become stronger and wiser because of it. We might have more life experiences, so it’s good.

(P4)

Happiness and love in the relationship (D3, P5, P6): Having a person with high-support needs in their close environment, also added much to the lives of the participants. One of the participants (P5) was outspoken that his daughter did not make him unhappy, stating that having a child with a disability is an enrichment in their lives and opens a world they did not know before. One of the mothers (P6) of a woman with PIMD started beaming when talking about her daughter and countered all the negative things by mentioning something positive about her family. She emphasized that the woman with PIMD was her daughter, and that was a part of her uniqueness, and that she was proud of her. One of the participants (D3) talked about the attraction he still feels for his wife with dementia and that he promised to be there on good and bad days when they married, so he keeps coming to visit her every day.

Yes, I say [name wife] is a wonderful person. Always been there for me and still is, because otherwise I wouldn’t keep coming, right? That’s how I see it. Yes. And she has always had a friendly smile. You haven’t seen her, have you?

(D3)

3.2. Research Question 2: How Has the Uniqueness Been Discovered?

The participants described how they discovered the uniqueness of their relative with high-support needs, and their stories depended on what they saw as uniqueness. Two themes emerged, namely the daily search they had and still have to do, and the discoveries from childhood (Figure 2).

3.2.1. Daily Search (D1, P4)

The relatives of our participants cannot express themselves in conventional verbal ways. They experience difficulties communicating their uniqueness, preferences, needs, and feelings. As a consequence, discovering these aspects was and is a daily search for the participants. This search felt even more urgent for the dementia group, as their situation is constantly evolving. One participant (D1) mentioned that she believes her mother wants to convey something, but she is unsure what it is, and she constantly tries to read the facial expressions of her mother to assess her well-being. A mother (P4) of a relative with PIMD shared the various efforts they have made to understand her daughter and how they are still searching, as her daughter continues to change with age.

Ah yes, satisfied. So you go and find out for yourself, right? If she starts crying or whining… You look to see what she does like, what she wants, and then you try things that you think, okay, that’s something… If there’s really something, like those little programs [points to the TV], I often turn it off and put something else on, because I don’t know if she understands it. Like, Bumba or something, she likes that. You can see that too, because then she laughs sometimes.

(P4)

3.2.2. Discoveries from Childhood (P5, P6)

To understand who their relatives are, participants in the PIMD group frequently referred to events from the childhood of their relative and reflected on how those experiences continue to influence and reappear in their relatives’ lives today. The father (P5) of a woman with PIMD explained how they have learned about the syndrome of his daughter and related who she is to this syndrome. Contrary to this, a mother (P6) of a woman with PIMD focused more on the personality of her daughter, independent from the disabilities. She described, for example, her curiousness, being an easy baby wanting to discover the world.

Uhm… she was an easy baby, but from the moment she started discovering the world, yes, she went her own way. Uh…, haha, because at home, you know, one of those little devices with wheels that they can sit in when they can’t walk yet, when they can’t crawl yet, so she could go everywhere. Yes, she went everywhere, that’s true, haha, that was fun. And once there was chocolate on the table, she [makes a grabbing motion]. Back then, she could still grab.

(P6)

This topic did not arise during conversations with participants who have a relative with dementia. Naturally, because the participants entered the life of the person with dementia later, they are unable to reflect on the childhood of their relatives. The daughters could not recall how they discovered the uniqueness of their mother, having grown up with her.

3.3. Research Question 3: How Does the Uniqueness Come to the Fore into Care?

To provide PCC, it is important to integrate the uniqueness in the care. Family, as the people who know the uniqueness of the person with high-support needs best, are crucial in shaping this care by providing information to the care organizations and the help they give in care. The participants talked about three different themes explaining how this uniqueness is integrated into the care of their relative (Figure 3). The first theme is the care provided by the family members themselves, including the subtheme sense of responsibility of family members. The second theme is shaping care in the organization and the third theme is the importance of place.

3.3.1. The Care Provided by Family Members (D1, D2, D3, P4, P5, P6)

All the participants adjusted their lives so that they could take care of their family members in the best possible way. In caring for their relatives, they tried to make their lives as comfortable as possible by choosing the things they enjoy, like swimming or eating their favorite foods, by focusing on maintaining the relationship with other important people in their lives, like grandparents or grandchildren, or by adhering to certain rituals their relative always had. Multiple participants (D2, P4, P5, P6) changed the times they work and where, and everyone (D1, D2, D3, P4, P5, P6) did administrative and household tasks for their relative. Different participants (D2, P5) seemed to regularly stand up or advocate for (the health of) their relative, for example, by having medication adjusted or arranging meetings with doctors.

It didn’t get worse. But he wanted to change it spectacularly, there was a new medicine. And then she had one seizure after another, it was… yeah, she almost couldn’t get out of it. That was still during the COVID-19 period, we weren’t allowed in the house. Then we contacted the uh… GP here. Doctor [name doctor], who is also connected here. He’s a regular GP. Then we said look, it’s time for you to act, because uh… This can’t go on. This, this, this will end fatally. If we hadn’t acted, she wouldn’t be here anymore, I think. She would have gone into a status, so uh… a seizure you can’t get out of, which is then fatal. And that’s how it was.

(P5)

Sense of responsibility of family members (D1, D2, P4, P5, P6): Most participants mentioned that they feel responsible for their relative with high-support needs. They feel that they know the person best and that they should also convey this knowledge to caregivers. Sometimes the sense of responsibility was partly explained by a promise to the husband of the person with dementia (D1), or by the expectations they had about how to fulfill the parent role (P4, P6). Some participants relied on others to share the responsibility, for example, the siblings (D1, D2) or their partner (P5, P6). For some of the participants it was a constant battle between caring for themselves and caring for their family member (D2, P4).

Uh… it’s okay, it’s okay. I find it difficult, well, difficult, to distance myself like that. Yes. Sometimes I feel like those Tuesdays and Wednesdays are my days off, I can’t do anything else, well. Sometimes I feel like, ah, then I have to take her with me. Yes, that should actually be possible, then I should do it too, but yeah, sometimes you don’t always do that.

(P4)

3.3.2. Shaping Care in the Care Organization (D2, P4, P5, P6)

There was a close collaboration between the participants and the care organizations to provide good PCC for their relatives with high-support needs. Together, they decided what their relative does during the day, tailored to preferences and care needs. For example, one participant (P5) has recorded stories so his daughter can always listen to them, even when he is not there. The participants in the dementia group seemed a little less involved in choosing activities, probably because the situation is more temporary, and they had less time to grow into the situation. Nonetheless, one of the participants (D2) tried to involve her mother in “real society” as much as possible, even though it is within the walls of the care organization, because she saw that her mother flourished there.

She can be very… very out of it, I’ll say, and not understand who I am or anything, and then the nurse or the uh… caregiver will say, hmm, she’s been sleeping a lot today or she hasn’t eaten much. Uh… when I come, even if she doesn’t recognize me, she can really say no, no, but yeah, with the wheelchair you can move her around yourself and as soon as we’re on our way, I see that she really blossoms, that she really enjoys it… She really likes being in the cafeteria.

(D2)

The parents of the people with PIMD also talked about the process of the transition to the care organization and how they built up the trust to hand over the care. The parents (P4, P5, P6) talked about the future and how they wanted everything to be arranged for their relative and to find a place where they feel at home and are known. The mothers (P4, P6) divided the care with the care organization, whereby their daughters still came home twice a week.

I’ve always known that if something were to happen to me and that child had to suddenly, from one day to the next, day in and day out, that wouldn’t be fun either. Okay, she will get used to it, but, but, no. Yes, we have always been able to…

(P4)

3.3.3. Importance of Place (D1, P5)

In providing care that fits the uniqueness of their relatives, two participants emphasized the importance of place. It was the choice of her mother to go to this specific care organization, because it had a good reputation (D1). The participant respected this choice and was satisfied with how her mother is cared for, stating that it is her familiar environment. The father (P5) recounted the first time they left his daughter in the care organization, and how they were reassured when she seemed to relax before they left. He stated that they are happy with the care organization and all the staff that works there.

That was also for us, the moment she was here for fifteen minutes, on [date], uhm… that she was already sitting there, we were already busy with the cupboard, and she was sitting in the common area, fussing. We thought, okay, then we can leave with peace of mind. Well, we hoped so, because yes, we know the staff now, so… a really nice group here, that too.

(P5)

4. Discussion

The current study aimed to explore how family members interpret and give meaning to the uniqueness of their relatives with high-support needs, whereby people with dementia and people with PIMD functioned as exemplary groups. Three research questions examined the uniqueness of their relatives, the discovery of that uniqueness, and how care takes this uniqueness into account.

All the participants involved in this research focused in their narratives on the past (‘who she used to be’), the present (‘who she is now’) and the future (‘who she will become’) of their relative with high-support needs, when they were answering the first research question focusing on the uniqueness of their relatives. Care and support is often focused on knowledge of the person, defined through years of living, and includes, among others, past roles, values, and personality (Buron 2008). Buron (2008) calls this individual personhood, but this can also be seen as acknowledging the uniqueness of the person receiving care (Byrne et al. 2020; Kitwood 1997). It is therefore not surprising that the past and the present were central parts of the participants’ narratives. It illustrates that their relatives with high-support needs possess a dynamic, temporal sense of identity, which partly derives from their biographical history, which is an account of the life of a person (Tieu et al. 2022). However, the change in the dementia group was interpreted differently than in the PIMD group. In the dementia group it was often emphasized that their relative was still there and that they should be happy with that, but some participants also talked about losing their relative and about their relative going back to childhood or being in their own world, showing an ambiguity in how the participants understand and interpret the changes in their relative (Hennelly and O’Shea 2021). In the PIMD group the participants often talked about a more gradual change as the people with PIMD were growing up, showing that knowledge about who a person is in the past and present can give space to change (Lindemann 2009; Vehmas and Mietola 2021).

The relationship between participants and their relatives with high-support needs, and how this influenced the uniqueness, was a common thread throughout their stories. This connection, referred to as (importance of) family ties, emerged as a central theme that influenced all other themes. The participants stated that the relationship they have with their relative makes their relative unique. They stressed the responsibility they feel for the care of their relative, and dreamed about a future in which they can still be around. Almost all the participants mentioned that they are only happy when their relative is happy, showing a form of interdependence and connectedness (Kittay 1999). This underlines that who we are is always relational (Davy 2019; Lindemann 2019), and construed in and through relationships influencing the narrative about ourselves (Davy 2019). This is closely connected to acknowledging personhood, which only makes sense within relationships (Gagnon and Marcotte 2025; Kitwood 1997). Thus, being a unique individual can only be possible within close relationships, which is closely linked to the definition of personhood provided by Kitwood (1997). This follows the idea that the identity of a person, which includes the uniqueness, consists of different stories told by the person themselves and by third-person perspectives (Lindemann 2009). Family members have an important role in telling stories in those third-person perspectives, because they usually know the person well over a longer period of time.

There are some differences between the stories of the family members of people with PIMD and people with dementia, especially when it comes to the second research question about discovering the uniqueness. For example, the family members of people with PIMD knew the person from when they were born, while the family members of people with dementia got to know the person later in life, which shows the difference between the groups when it comes to answering the second research question about discovering the uniqueness. The family members of the people with PIMD based their stories on things that happened during childhood or youth or talked about discovering the syndrome the relative had directly after birth, which is seen in the theme discoveries from childhood. This was not possible in the dementia group. Not only were there differences between the groups focusing on PIMD or dementia, but also within. Some of the participants were mainly focused on the disabilities their relative had, while others had a more holistic view on their relative. This holistic view on who a person is, is crucial in PCC (Eklund et al. 2019). Therefore, when providing PCC as carers, it is important to have a holistic approach, especially when family members mostly focus on the disabilities.

When discussing research question three, how care takes the uniqueness in account, all participants discussed places and rituals, highlighting their significance in contributing to a sense of uniqueness (Lindemann 2009). This is shown in themes such as importance of place. The participants were actively involved in shaping the care of their relatives, taking their uniqueness into account. In their stories, all the elements of involvement, namely visiting their relative, engaging in different (care) activities, planning and monitoring care and providing social, emotional, financial and advocacy support, mentioned by Wei et al. (2024), were included. Especially the advocacy support was striking in the stories of some participants, telling how they fought for better care for their mother or daughter. It highlights the importance of co-creation in PCC (Hakobyan et al. 2020) and the essential contribution of family members (Gjermestad 2017).

Describing the uniqueness of their relatives was not easy for the participants, especially how this uniqueness is integrated in care and how this uniqueness is discovered, which is also seen in the less extensive results about research questions two and three. The participants offered examples of certain behaviors, activities, relationships or preferences related to the uniqueness of their relative, but never gave a general description or conceptualization about what this uniqueness means. Often the uniqueness of their relative seemed to be a given that they had never consciously considered. This can also be linked to tacit knowledge, knowledge that is difficult to put into words and is developed over a long period of time being close to each other (Kruithof et al. 2024). In addition to not finding words, some participants asked multiple times if the answer was correct or if that was what the researcher was looking for, indicating an uncertainty about their own knowledge of the subject, and which could be influenced by the researchers not giving a definition of uniqueness either. It highlights the many uncertainties people can have in understanding and forming an overview of others (Skarsaune 2023), especially when the high-support needs likely have an influence on how people perceive the world (de Haas et al. 2022; Kitwood 1997).

There are some limitations to the current study. First, when using IPA, a homogeneous sample is recommended (Smith et al. 2009). We selected our sample based on the family member that is closest and provided most care to the person with high-support needs. However, all the family members had different roles and relationships with the persons with high-support needs. We had daughters, mothers, a father and a partner in the sample. These varied relationships could have influenced the perception of the uniqueness of the person with high-support needs. For future research, it would be valuable to consider the impact of these different roles on the experience of uniqueness. Second, how we look at persons is influenced by the culture we are in (Degnen 2018). The Western notion of who someone is, is influenced by the focus on individualism, while in other cultures the connection with others, being a dividual, is more emphasized. The interviews were conducted in Belgium, likely reflecting a Western, individualistic perspective on who a person is. For future research, it is essential to consider these cultural differences, especially as populations become increasingly multicultural. This shift will influence how people prefer to receive PCC.

As this study shows, family can describe to a certain extent the uniqueness of persons with high support needs and in this way, they can help shaping PCC. However, they experience uncertainty about this topic. Therefore, it is recommended that professionals take the views of the family members into account and encourage the family members to share their views when caring for people with high-support needs. Care is produced by making shared meaning and a collective knowledge production (Smith et al. 2022; Vehmas and Mietola 2021). Family is of vital importance in producing this knowledge and telling this narrative of the person with high-support need, a narrative that is essential in PCC. This study also shows the changes in the lives of people with high-support needs, which is an important part of their life story. However, most of the care in residential facilities is focused on homogeneous groups of people getting the same activities and support (Vehmas and Mietola 2021). This does not leave much room for people’s uniqueness and changes. Care professionals should be aware of those changes and adjust the activities and support to the current preferences and needs of the people with high-support needs, even if the family members are not that vocal about the current preferences. It is recommended for care organizations to put more emphasis on the temporal dimensions of uniqueness, rethinking and reconceptualizing how they view a person and adjust the care and support to this changing uniqueness by, for example, regular discussing the uniqueness with family members and the rest of the staff.