Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study

Figures & data

Figure 1. SENSE-GARDEN space in care home 1, Norway (left) and care home 2, Portugal (right)

Table I. Overview of participants

Dyad number	Care home	PWD participant code	Age	Type of dementia	CDR Level	SG Use (weeks)	Caregiver participant code	Relationship
1	1	NOp01	94	Unspecified	2	16	NOic01	Mother-daughter
2	1	NOp02	83	Unspecified	2	12	NOic02	Husband-wife
3	1	NOp03	79	Alzheimer’s Disease	2	12	NOic03	Father-daughter
4	2	PTp01	88	Dementia with Lewy Bodies and Parkinson’s	2	12	PTic01	Close family friends for a considerable amount of years
5	2	PTp03	71	Vascular Dementia	2	16	PTfc03	Care home staff
6	2	PTp04	89	Dementia with Parkinson’s	2	16	PTic04	Close friends
7	2	PTp05	81	Unspecified	2	16	PTfc05	Care home staff
8	2	PTp06	69	Alcohol-related dementia	3	12	PTic06	Close friends
9	2	PTp07	77	Unspecified	2	12	PTfc07	Care home staff
10	2	PTp08	92	Unspecified	2	16	PTic08	Father-Daughter
11	2	PTp09	97	Unspecified	2	16	PTic09	Aunt-niece
12	2	PTp10	89	Dementia with Parkinson’s	3	12	PTfc10	Care home staff

PWD: Person with dementia; ic: Informal caregiver (family/friend); fc: formal caregiver (professional care staff); NO: Norway; PT: Portugal; CDR: Clinical Dementia Rating Scale; SG: SENSE-GARDEN

Figure 2. Activities within the SENSE-GARDEN: Move to improve (a); Life road (b); Films of my life (c); Memory lane (d); Scent to memories (e); Reality wall (f)

Table II. Overview of interviews

Dyad	Interview	Interview type	Participants	Interviewer(s)
1	1	Individual	PwD	SG Facilitator
	2	Individual	ICG	SG Facilitator
2	3	Individual	PwD	SG Facilitator
	4	Individual	ICG	SG Facilitator
3	5	Individual	PwD	SG Facilitator
	6	Individual	ICG	SG Facilitator
4	7	Group	PwD, ICG	Researcher + SG Facilitator
5	8	Individual	PwD	Researcher + SG Facilitator
	9	Individual	FCG^a	Researcher + SG Facilitator
6	10	Group	PwD, ICG	Researcher + SG Facilitator
7	11	Group*	FCG, FCG**	Researcher + SG Facilitator
8	12	Individual*	ICG	Researcher + SG Facilitator
9	13	Group	PwD, FCG	Researcher + SG Facilitator
10	14	Individual*	ICG	Researcher
11	15	Individual*	ICG	Researcher + SG Facilitator
12	16	Individual*	FCG^a	Researcher

PwD: Person with dementia; ICG: Informal caregiver; FCG: Formal caregiver; SG Facilitator: SENSE-GARDEN Facilitator

^aThe caregiver did not join any SENSE-GARDEN sessions

*Interview had to be conducted over the phone due to the coronavirus pandemic. It was not possible to interview the PwD in the dyad during this time.

**The PwD in this case had become seriously ill at the end of the study and it was not possible to conduct an interview with him. Another member of care staff who had helped facilitate some SENSE-GARDEN sessions with the resident joined the interview.

Table III. Development of deductive codes

Code name	Theoretical foundation for code	Code definition
Temporal focus	Building on the work of Mead, symbolic interactionists believe that the past is symbolically reconstructed in the present, and assigned new meaning based on an anticipated future (Mead, 1932; Maines, 2001). Given the SENSE-GARDEN’s focus on the life story of the person with dementia, it is important to understand how the participants refer to past, present, and future as a result of interacting with personally significant media.	Referring to past, present, and/or future
Shared identity	Symbolic interactionists believe that meaning, emotions, and pasts can be shared between individuals through joint interaction (Mattley, 2002). As such, social—or shared—identities can be co-constructed as a result of these interactions and shared values. The code “shared identity” is to reflect on how dyads in the study—particularly familial dyads—may feel that their identity is shared based on the meaning they assign to their experiences.	Referring to identity as co-constructed between two or more people
Meaning	People assign meanings to objects, places, events, others etc. and these meanings are constantly reinterpreted as a result of interaction with these objects etc. (Blumer, 1986). The meaning that an individual has attributed to the world around them may influence how they experience the SENSE-GARDEN intervention.	Attributing meaning to media contents, object, place, event, or memory
Interpersonal relationships	Given that symbolic interactionism concerns how behaviour is shaped through interaction with others, the exploration of how participants perceive and describe their relationships with others may provide insight into how these relationships are experienced in the context of SENSE-GARDEN.	Referring to relationships with other individuals
Behaviour and actions	Symbolic interactionism concerns human behaviour and how it is shaped through social interaction. The way that participants perceive and interpret their own behaviours and the behaviours of others, as well as how they interpret their interactions, will contribute to the overall understanding of experiences within SENSE-GARDEN.	Referring to verbal and/or non-verbal behaviours and actions
Space and aesthetics	Transactionalism emphasizes that human experience is shaped through an individual’s interaction with their environment (Dewey, 1934). Understanding the participants’ awareness and perceptions of their surrounding environment is therefore vital to making sense of their experiences both in and outside of SENSE-GARDEN.	Referring to SENSE-GARDEN space or space of other environments
Emotions	Both Dewey and Mead viewed emotion as embedded in social interaction (Ward & Throop, 1989). According to a symbolic interactionist perspective, emotions are not only experienced and reflected upon in response to situations, but the ways in which they are expressed—or not expressed—can shape social interactions and relationships (Mattley, 2002). Exploring how the participants experience and make sense of their emotions, as well as the emotions of others, may provide insight into the relationships they hold with one another.	Referring to both positive and/or negative emotions and feelings

Figure 3. Generating inductive codes

Table IV. Final codebook

Code name	Definition	Description	Example
Meaning	Meaning is attributed to a place, event, media, or memory	The participant talks about the meaning/significance of media (music, photographs etc.), places (e.g., hometown), events or memories	“I know that Fátima* is very important to her, and the religious part touches her a lot”
Interpersonalrelationships	Discusses interpersonal relationships with other individuals	Interpersonal relationships with other individuals (living or deceased, inside and/or outside of SENSE-GARDEN). The emotional and/or social nature of the relationship may be discussed	“I’ve learned more about appreciating our 60 years of life and all of the 21,000 days we have had. Most of them have been happy. It has not been said that we have never quarrelled, but we have never gone to bed as enemies. We have taught ourselves to pay attention to each other”
Behaviour and Actions	Interaction (verbal and/or non-verbal)	May refer to gestures, body language, facial expressions as well as verbal communication. Can refer to interaction either inside or outside of SENSE-GARDEN	I generally think it has become easier to talk to her even when she is not in the SENSE-GARDEN. She is more sharp and able to hold the thread of the conversation better than she did before.
Space and aesthetics	Participant discusses space and/or comments on aesthetics	Can refer to the SENSE-GARDEN space, or space of other environments (e.g., other areas of the care facility)	“It’s the design of the room, the fact that there are no sharp edges, no corners, it’s carpeted. It is shielded from the rest of the world. One goes into something else, one forgets time.”
Emotions	Emotions are discussed	Emotions experienced either inside or outside SENSE-GARDEN are discussed. The nature of the emotion can be mixed (does not have to be only positive or negative).	“I even cried while playing the children’s song. it was a powerful experience … it was strong for me when my mother sang along to these songs. I think my mom is happy when she is here, happy and bright at heart.”
Professional caregiving relationship	Discusses the care given to the PwD by the professional caregiver	Refers to how professional caregiver interacts with the PwD, how they facilitate the SENSE-GARDEN session or the caregiving relationship outside of sessions	“I do not believe all the caregivers have become involved in his life situation and there is always a reason why they are angry or sad. I think the staff misinterprets the user. One must find the reason why the user is the way he is.”
Impact of the intervention	Discusses benefits or issues as a result of the SENSE-GARDEN intervention	Refers to either immediate or long-term effects (both positive and negative) of the intervention on the person with dementia and/or caregivers	“I generally think it has become easier to talk to her even when she is not in the sensory garden. she is more sharp and able to hold the thread of the conversation better than she did before. She doesn’t ask the same question again. if I switch topic and then comes back to the previous conversation the topic, she manages to remember what we talk about 3 minutes ago. It has become much easier to talk to her now on the phone. It is probably the change that I think I have seen.”
Components of SENSE-GARDEN	Discusses aspects of the SENSE-GARDEN	Refers to activities, media and/or technology within the SENSE-GARDEN space	“It was especially the pictures combined with the music I liked the best. The family pictures I liked a lot. It is so wonderful, and it is accurate that I want to burst with enthusiasm. Quite phenomenal.”

* Fátima is a Portuguese town that’s home to the “Sanctuary of Fátima”, a well-known Catholic pilgrimage destination.

Figure 4. Thematic map of themes generated through reflexive thematic analysis

Figure 5. Transactional model of narrative identity and relationships facilitated through SENSE-GARDEN

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Data availability statement

The data that support the findings of this study are openly available in Zenodo at https://doi.org/10.5281/zenodo.4081468