| Literature DB >> 35581672 |
Patrick Pui Kin Kor1, Clare Tsz Kiu Yu1, Justina Yat Wa Liu1, Daphne Sze Ki Cheung1, Rick Yiu Cho Kwan2, Angela Yee Man Leung1, Denise Pik Mei Liu3, Joan Mo King Hon4.
Abstract
Entities:
Keywords: caregiving; cognitive stimulation; community nursing; dyadic relationship; family caregiver
Year: 2022 PMID: 35581672 PMCID: PMC9347533 DOI: 10.1111/opn.12471
Source DB: PubMed Journal: Int J Older People Nurs ISSN: 1748-3735 Impact factor: 2.471
FIGURE 1Theoretical framework explaining the effects of caregiver involvement on their well‐being (Leung et al., 2017)
Outline of the home‐based, multisensory cognitive stimulation programme and component of treatment fidelity
| Part A outline of the programme | |||
|---|---|---|---|
| Activities | Theme | Objectives | Contents |
| 1 |
Smell and Touch (Dyadic aroma massage) |
Stimulating the senses of smell and touch Teaching the basic skills of aroma massage Encouraging PWD‐caregiver interactions |
Reality orientation Dyadic aroma massage Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 2 |
Vision and Touch (Making handicrafts) |
Stimulating the senses of smell and touch Promoting creativity and executive function Increasing the concentration and attention span Enhancing the collaboration of the PWD‐caregiver dyad |
Reality orientation Making handicrafts Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 3 |
Taste, Touch and Smell (Garnishing and tasting fruits and vegetables) |
Stimulating the senses of taste, smell and touch Enhancing visual–spatial skills and executive function Enhancing the collaboration of the PWD‐caregiver dyad |
Reality orientation Garnishing and tasting fruits and vegetables Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 4 |
Vision and Touch (Horticulture) |
Stimulating the senses of vision and touch Enhancing visual–spatial skills and executive function Enhancing the collaboration of the PWD‐caregiver dyad |
Reality orientation Horticulture activity Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 5 |
Hearing and Touch (Singing and dancing with musical instruments) |
Stimulating the senses of hearing and touch Promoting reminiscences through songs Enhancing dual motor‐cognitive tasks |
Reality orientation Singing and dancing with musical instruments Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 6 |
Taste, Touch, and Smell (Making and tasting dumplings) |
Stimulating the senses of taste, smell, and touch Enhancing visual–spatial skills and executive function Enhancing the collaboration of the PWD‐caregiver dyad |
Reality orientation Making and tasting dumpling Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 7 |
Hearing (Guessing songs and singing) |
Stimulating the sense of hearing Promoting reminiscences through songs |
Reality orientation Guessing songs and singing Sharing and discussing one's feelings, successes and difficulties in performing the activities |
| 8 |
Vision and Touch (Making photograph albums) |
Stimulating the senses of vision and touch Enhancing visual–spatial skills and executive function Enhancing the collaboration of the PWD‐caregiver dyad |
Reality orientation Making photograph albums Sharing and discussing one's feelings, successes and difficulties in performing the activities |
FIGURE 2Study flow diagram
Participant characteristics and outcome measurements at baseline (N = 144; 72 dyads)
| Family caregivers | All ( | Intervention ( | Control ( |
|
|---|---|---|---|---|
| Demographic data | ||||
| Gender (%) | ||||
| Male | 17 (23.61) | 7 (19.44) | 10 (27.78) | 0.408 |
| Female | 55 (76.39) | 29 (80.56) | 26 (72.22) | |
| Age | ||||
| Mean (SD) (Range: 21–85) | 65.46 (14.72) | 70.14 (12.56) | 60.92 (15.40) | 0.391 |
| Relationship with PWD, (%) | ||||
| Spouse | 40 (55.56) | 22 (61.11) | 18 (50.00) | 0.321 |
| Son/daughter | 24 (33.33) | 12 (33.33) | 12 (33.33) | |
| Grand‐daughter/son | 3 (4.17) | 0 (0.00) | 3 (8.33) | |
| Son/daughter‐in‐law | 5 (6.94) | 2 (5.56) | 3 (8.33) | |
| Income per month (%) | ||||
| Less than $2000HKD | 9 (12.50) | 2 (5.56) | 7 (19.44) | 0.337 |
| $2000 ‐ $9999HKD | 34 (47.22) | 19 (52.78) | 15 (41.67) | |
| $10,000 ‐ $19,999HKD | 19 (26.39) | 9 (25.00) | 10 (27.78) | |
| More than $20,000HKD | 10 (13.89) | 6 (16.67) | 4 (11.11) | |
| Education level (%) | ||||
| No schooling | 7 (9.72) | 3 (8.33) | 4 (11.11) | 0.755 |
| Primary | 23 (31.94) | 13 (36.11) | 9 (25.00) | |
| Secondary | 23 (31.94) | 10 (27.78) | 13 (36.11) | |
| Tertiary or above | 19 (26.39) | 10 (27.78) | 10 (27.78) | |
| Employment status (%) | ||||
| Employed | 15 (20.83) | 5 (13.89) | 10 (27.78) | 0.198 |
| Retired | 50 (69.44) | 29 (80.56) | 24 (66.67) | |
| Unemployed | 4 (5.56) | 2 (5.56) | 2 (5.56) | |
| Duration of care (Month) | ||||
| Mean (SD) (Range: 8–240) | 85.4 (107.12) | 100.2 (135.81) | 71.4 (69.42) | 0.901 |
| Outcome Measurements (Mean, SD) | ||||
| Perceived Stress Scale (Range: 14–36) | 24.46 (4.93) | 25.21 (4.37) | 23.75 (5.37) | 0.367 |
| Zarit Burden Interview (Range: 10–67) | 37.74 (11.91) | 38.68 (12.08) | 36.79 (11.84) | 0.610 |
| Positive Aspect of Caregiving (Range: 8–44) | 33.27 (8.47) | 32.85 (8.95) | 33.67 (8.10) | 0.791 |
| Centre for Epidemiological Studies‐Depression (Range: 1–46) | 16.76 (9.13) | 17.21 (9.00) | 16.32 (9.36) | 0.551 |
| NPI‐Q (Caregiver distress) (Range: 2–30) | 11.00 (8.09) | 11.59 (8.08) | 10.41 (8.18) | 0.556 |
| WHO Quality of Life‐BREF (Range: 4–20) | 13.23 (2.97) | 12.71 (3.26) | 13.72 (2.62) | 0.261 |
Mann–Whitney's test or Chi‐square was used.
US$1 = HK$7.8.
GEE models for comparison of outcomes between the control and intervention groups across time
| Intervention group ( | Control group ( | Group effect | Time effect | Group X time | ||||
|---|---|---|---|---|---|---|---|---|
| Mean (SD) | Mean (SD) | Beta (95% CI) |
| Beta (95% CI) |
| Beta (95% CI) |
| |
| PSS | ||||||||
| Baseline | 25.21 (4.43) | 23.75 (5.30) | −0.30 (−2.51, 1.91) | .792 | ||||
| Post‐test | 24.76 (4.39) | 24.50 (4.71) | −1.69 (−2.41, −0.98) | .001 | 1.75 (0.45, 3.06) | .009 | ||
| 3‐month | 25.15 (4.70) | 25.44 (4.87) | −0.94 (−1.58, −0.31) | .004 | 0.56 (−0.52 1.65) | .310 | ||
| ZBI | ||||||||
| Baseline | 38.68 (12.25) | 36.38 (11.60) | −2.56 (−7.54, 2.41) | .313 | ||||
| Post‐test | 36.76 (11.88) | 37.95 (10.72) | −3.07 (−4.67–1.46) | .001 | 4.86 (2.20 7.52) | <.001 | ||
| 3‐month | 36.88 (11.55) | 39.44 (9.93) | −1.50 (−2.49–0.51) | .003 | 1.38 (−0.42 3.18) | .133 | ||
| PAC | ||||||||
| Baseline | 32.85 (9.08) | 33.67 (7.99) | 3.86 (1.04, 6.69) | .007 | ||||
| Post‐test | 35.41 (7.55) | 31.81 (6.50) | 1.47 (−0.08 3.02) | .062 | −6.56 (−9.42, −3.70) | <.001 | ||
| 3‐month | 37.94 (6.63) | 32.19 (6.33) | −0.39 (−1.37 0.60) | .439 | −2.14 (−3.76, −0.53) | .009 | ||
| CESD | ||||||||
| Baseline | 17.92 (9.96) | 16.50 (9.21) | 1.50 (−2.67, 5.66) | .481 | ||||
| Post‐test | 18.92 (10.24) | 17.06 (7.32) | −1.03 (−2.71, 0.66) | .232 | −0.08 (−2.63, 2.46) | .949 | ||
| 3‐month | 19.03 (10.14) | 17.53 (7.72) | −0.46 (−1.60, 0.65) | .407 | 0.37 (−1.35, 2.09) | .674 | ||
| QoL | ||||||||
| Baseline | 12.71 (3.31) | 13.72 (2.59) | 1.03 (−0.11, 2.17) | .075 | ||||
| Post‐test | 13.00 (3.09) | 13.56 (2.36) | 1.17 (0.49, 1.84) | .001 | −2.05 (−3.05, −1.05 | <.001 | ||
| 3‐month | 13.59 (2.58) | 12.56 (2.34) | 1.00 (0.48, 1.52) | <.001 | −1.59 (−2.40, −0.78) | <.001 | ||
| NPI‐Q_Caregiver distress | ||||||||
| Baseline | 11.59 (8.19) | 10.81 (8.29) | −0.35 (−3.77, 3.07) | .840 | ||||
| Post‐test | 10.65 (7.43) | 11.67 (8.24) | −0.19 (−1.43, 1.06) | .769 | 1.13 (−0.81, 3.07) | .254 | ||
| 3‐month | 10.65 (7.16) | 11.00 (7.63) | 0.67 (−0.28, 1.62) | .164 | −0.67 (−2.10, 0.75) | .354 | ||
| MOCA‐5 mins | ||||||||
| Baseline | 11.59 (5.88) | 11.13 (6.16) | 1.59 (−0.77, 3.94) | .187 | ||||
| Post‐test | 11.82 (5.15) | 11.40 (6.06) | 0.65 (−0.37, 1.67) | .209 | −1.12 (−2.43, 0.18) | .091 | ||
| 3‐month | 12.06 (5.21) | 10.47 (4.99) | 0.93 (−0.06, 1.92) | .065 | −1.17 (−2.37, 0.04) | .059 | ||
| Attention (sub‐scale of MOCA‐5 mins) | ||||||||
| Baseline | 3.15 (1.77) | 2.56 (1.95) | 0.81 (0.03, 1.60) | .043 | ||||
| Post‐test | 3.74 (1.64) | 2.88 (1.75) | −0.12 (−0.40, 0.17) | .423 | −0.23 (−0.81, 0.35) | .439 | ||
| 3‐month | 3.49 (1.64) | 2.68 (1.77) | 0.21 (−0.09, 0.50) | .170 | 0.04 (−0.43, 0.51) | .865 | ||
| Verbal fluency (sub‐scale of MOCA‐5 mins) | ||||||||
| Baseline | 2.50 (2.18) | 2.04 (1.35) | 0.72 (0.02, 1.43) | .044 | ||||
| Post‐test | 2.66 (1.98) | 2.11 (1.22) | 0.02 (−0.28, 0.31) | .908 | −0.26 (−0.65, 0.12) | .179 | ||
| 3‐month | 2.75 (1.88) | 2.02 (1.06) | 0.08 (−0.14, 0.31) | .470 | −0.17 (−0.56, 0.23) | .402 | ||
| Orientation (sub‐scale of MOCA‐5 mins) | ||||||||
| Baseline | 3.03 (1.89) | 3.11 (2.06) | 0.07 (−0.82, 0.96) | .879 | ||||
| Post‐test | 2.91 (1.53) | 2.75 (1.65) | −0.03 (−0.29, 0.24) | .844 | −0.15 (−0.61, 0.31) | .519 | ||
| 3‐month | 3.21 (1.99) | 3.14 (1.84) | −0.39 (−0.77, −0.01) | .047 | 0.09 (−0.47, 0.64) | .755 | ||
| Delayed memory (sub‐scale of MOCA‐5 mins) | ||||||||
| Baseline | 2.91 (2.51) | 3.39 (2.31) | 0.51 (−0.47, 1.50) | 0.308 | ||||
| Post‐test | 2.97 (2.15) | 3.31 (2.24) | 0.41 (−0.17, 0.10) | .164 | −0.99 (−1.82, −0.16) | .020 | ||
| 3‐month | 3.49 (2.35 | 2.97 (1.89) | 0.34 (−0.15, 0.82) | .172 | −0.85 (−1.52, −0.18) | .012 | ||
| NPIQ | ||||||||
| Baseline | 11.47 (5.73) | 10.18 (6.42) | −0.97 (−3.76, 1.82) | .495 | ||||
| Post‐test | 8.82 (5.54) | 10.53 (6.51) | −2.65 (−3.64, −1.66) | <.001 | 3.01 (1.92, 4.10) | <.001 | ||
| 3‐month | 9.85 (5.43) | 10.36 (6.46) | −1.62 (−2.71, −0.53) | .004 | 1.81 (0.54, 3.07) | .005 | ||
Abbreviations: CESD, Center for Epidemiological Studies‐Depression; MOCA‐5 mins, Montreal Cognitive Assessment 5‐minutes; NPIQ, Neuropsychiatric Inventory–Questionnaire; PAC, Positive aspect of caregiving; PSS, Perceived Stress Scale; ZBI, Zarit Burden Interview.
Results of the focus group interview
| 1. Theme: Impacts on the caregiving and dyadic relationship | |
| Categories | Quotations |
| Improved understanding of people with dementia | L38 (C): I aware that my dad indeed knows how to sing. I also realised that he likes to sing, too! |
| L224‐230: After the programme, I realised that she likes to watch things…. Things like basketball competitions and Chinese opera singing. | |
| L79‐82: I also realised that the others (PWD from other groups) can create their own designs. For example, they are very detail‐oriented … they would ensure everything is symmetrical…. Through these activities, I realised that people with dementia do indeed have many strengths | |
| Increased insight on caregiving skills | L129: I would let her (domestic helper) know not to help him (PWD) do everything. She can assign him tasks that are safe for him (PWD). I encourage her to engage him by assigning him safe tasks to work on. It is not that he (PWD) is unwilling to do these tasks. It is whether we have allocated the right tasks for him to work on. |
| Everything taught in the session can be easily integrated into our daily life. Last time, we learned how to make our own dumplings. This is something that we can do every day and get in touch every day. We can smell these things. In our everyday life, we can indeed get in touch with different types of smells. This triggers me to think about how we can further apply “five senses” in our everyday life. It is not difficult to integrate these things into our daily life | |
| For example, cooking. You know, sometimes it is difficult to allow him to cook independently. But you can ask him to do the preparation part. Like, peeling the vegetables. This can train up his sense of touch | |
| L337‐343: Yes. I need to be more patient with him. If he cannot do it successfully the first time and if you shout at him, he would just give up and discontinue the activity. More patience is needed when taking care of him. You need to praise him more and encourage him. “You did it very well! But you need to take some rest” | |
| L239–242: I learned from the programme that I need to show him more care because there are many things that he does not understand. The most important thing is to show him more care and accompany him more often. I should spend more time walking with him | |
| Improved interactions within the dyads | L74: I think we cooperate quite well when building up the “diver” together (an activity inside the intervention)! |
| L204‐214: He (PWD) enjoys planting while I enjoy observing them. I (Caregiver) never water the plants because I do not know how to water them well. Every plant that I watered would die (laughing). Therefore, he is the person who is responsible for doing the watering or controlling the quantity of water | |
| 2. Theme: Impacts on the care recipients (PWD) | |
| Improved self‐understanding (capacity and strengths) | It is very simple. I can smell it…. I lost one third of my ability to smell, but I can still smell it |
| L18‐22 (PWD): The benefit is … (getting myself engaged in) eating and tasting and hearing. Understanding my own condition. What is good and what is bad…. My hearing and vision are bad | |
| L74–77: The final work that we built looks pretty. Through the process, he knows he is still “useful.” He gained some sense of achievement from the activity | |
|
Positive emotions Improved engagement in daily life | L57‐60: He (PWD) thinks this activity suits him He enjoys the activity a lot |
| He enjoys this programme a lot. He always feels as if the time has passed so quickly. He always looks forward to coming to the session. He puts on his shoes quickly to prepare to go out | |
| L104: I practiced five times a week. The singing one was fun. The songs that we come across in our everyday life are complex. My husband cannot follow the pace of those songs. But the songs taught in the session were much easier. He (PWD) sang those songs happily when we were back. We sang happily together at home | |
| L57‐60: He became much happier than before. Before this, he rarely spoke. But his mood has greatly improved after attending the programme. He is much happier now. It is good to know that he can still be happy even after he got the diagnosis of dementia | |
| L37‐38: There are many activities that the elders had never engaged in before. For example, the aroma session. These activities trained up our “five senses” | |
| Maintain physical activeness | L35: It involves physical exercises and activities like singing |
| L94‐99: The clapping exercise…. He has always been reluctant to do the exercises. He used to say he was tired. However, he does exercise almost every day now. Five days per week. He follows ‘this’ and then does his exercises. He also plays the one … about … ‘the ball’. This can train his flexibility … heart and eyes … basically everything about coordination. “Exercising can help him to slow down the deterioration | |
| Improved cognition | The activity trains up our brain’. Touching things…. Of course, he was not that smart at the beginning. But he gradually improved (his senses) by touching different objects |
| Easy to incorporate the skills in daily life | L170: He is able to recognise an ‘orange’ because he has them at home sometimes. But he cannot smell fruits like lemons. I asked him the other day “What about this?” He said he did not know. And then I asked again. He answered me that these are oranges |
| 3. Theme: Barriers to the implementation of the programme faced by the caregivers | |
| No patience | L38: He will become impatient when working on the tasks. He does not want to do them |
| Time constraints | L134‐137: We rarely practice because we have a lot of things to work on. We need to clean up the dust at home |
| Poor motivation to initiate practice | L107: I asked him (PWD) to come. But he was reluctant.… He does not even want to walk. He only wants to sleep. So, to him, he does not seem to have learned anything from the programme |
| L250‐251: She (PWD) knows how to do it. But the thing is that she does not want to “move” at all. That is strange. She does not want to move…. Even when she was given a smartphone to play with (something that the PWD used to like), she said she did not want it | |
| L349–354: I did not really practice with him at home because he showed no interest in anything. And I do not have much energy to talk to him about this.… He basically has no interests at all… | |