| Literature DB >> 33955324 |
Gemma Goodall1, Lara André2, Kristin Taraldsen1, J Artur Serrano1,3.
Abstract
Meaningful activities in dementia care can promote the co-construction of narrative identity in caregiving relationships, helping to preserve the sense of self in people with dementia.Purpose: Informed by symbolic interactionism and Deweyan transactionalism, the aim of this study was to develop a transactional model of how narrative identity and relationships are promoted through the use of a new technological solution, SENSE-GARDEN, that uses digital technologies and multisensory stimuli to facilitate individualized, meaningful activities.Method: We conducted a qualitative interview study to explore the experiences of people with moderate to advanced dementia and their caregivers in Norway and Portugal. After using SENSE-GARDEN for 12-16 weeks, 20 participants (7 persons with dementia and 13 caregivers) were interviewed. The interviews were analysed using reflexive thematic analysis.Entities:
Keywords: Dementia; identity; narrative; qualitative research methods; reflexive thematic analysis; relationships; symbolic interactionism; technology
Year: 2021 PMID: 33955324 PMCID: PMC8118425 DOI: 10.1080/17482631.2021.1920349
Source DB: PubMed Journal: Int J Qual Stud Health Well-being ISSN: 1748-2623
Figure 1.SENSE-GARDEN space in care home 1, Norway (left) and care home 2, Portugal (right)
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)
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 | FCGa | 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* | FCGa | 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.
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, | 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, | 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, | 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, | Referring to SENSE-GARDEN space or space of other environments |
| Emotions | Both Dewey and Mead viewed emotion as embedded in social interaction (Ward & Throop, | Referring to both positive and/or negative emotions and feelings |
Figure 3.Generating inductive codes
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