Leisa Bellmore , MSc
Artists’ Health Centre, Family & Community Medicine, University Health Network, Toronto, ON, Canada.Background
Dementia is a progressive neurological condition that affects over 50 million people. It impacts quality of life for those diagnosed, their care partners, and the relationship between the two. Strategies to enhance quality of life and relationships are needed. Shiatsu may improve care partners’ well-being. Using touch through shiatsu may offer a meaningful way for care partners to interact with their partners living with dementia.
Purpose
The purpose of this study was to explore care partners’ experience of using both self-shiatsu and shiatsu with their partner, as well as to explore care partners’ perceptions of the impact of shiatsu on the quality of their relationship.
Setting
This study took place at a centre providing programs for persons living with dementia and their care partners.
Participants
Participants were current and former attendees of the centre’s programs.
Research Design
This was a qualitative study with an interpretive/descriptive approach. Care partners were taught self-shiatsu to manage stress and a simplified, short shiatsu routine to use with their partner. Semi-structured interviews were conducted to elicit care partners’ experiences and explore their ongoing use of shiatsu at two and six weeks post-workshop.
Findings
Four care partners completed the study. A wide range of experiences with shiatsu were described, representing four key themes: Enhanced Awareness, Integrating Shiatsu into the Relationship, Barriers and Facilitators, and Potential and Possibility. Two found self-shiatsu beneficial. Using shiatsu with their partner was a favourable experience for only one, who found it a pleasant way to connect and interact. None of the participants felt using shiatsu with their partners affected their relationship quality.
Conclusions
The findings of this study are inconclusive. Self-shiatsu may be a helpful self-management approach for some care partners, but not for others. Shiatsu for persons living with dementia may not fit into the routines of many care partners. For others, however, it may offer a means to connect.
KEYWORDS: Acupressure, dementia, caregivers, self-management, self care, shiatsu
Alzheimer’s disease and related dementia are considered to be of epidemic proportions.(1) World wide, over 50 million people live with dementia.(2) Many more are indirectly affected as the impact on family and friends can be equally significant.(3,4)
Dementia is a progressive neurological condition that causes changes to cognition, physical abilities, behavior, and emotions.(5) While dementia impacts many aspects of one’s lived experience,(6) the need for connection and closeness remains.(5)
Spouses and children of persons living with dementia (PLWD) contribute substantially to their care.(7) Studies have noted stress, as well as physical, psychological, emotional and financial challenges, that care partners experience.(8–10) Both members of the dyad experience considerable life changes through the course of the disease.(7,11,12)
Progressive, non-deficit–based approaches indicate that dementia should be considered a condition that impacts relationships, rather than individuals.(13) As people relate through interaction and communication, changes to these can affect relationships.(14) According to Relational Theory, when connecting through relationships, we shape each other’s experience.(15) Connections with those close to them promote quality of life (QoL) for PLWD,(3,12) and enhance care partners ’ hopefulness.(16)
Touch can create a deep sense of connection.(17) It is a powerful element of relationships,(18) strengthening them and allowing people to feel closer.(19,20) It can ease suffering and communicate empathy.(21) Couples’ use of touch was found to be particularly potent, as it decreased pain.(22) Interpersonal touch contributes to health and meaning in life, and is recognized as a psychosocial need.(23) These are significant considerations for PLWD.
Touch is inherently reciprocal, benefitting both parties. Research has shown that massage reduces stress hormones in the giver and recipient.(17,24) Nurses’ intentional touch with patients, including PLWD, benefits both parties.(21) Health-care workers felt equal, sharing a close bond with PLWD and other elderly patients when using massage.(19) Touch and massage can strengthen rapport and communication in people who experience confusion or inability to communicate verbally, including PLWD.(25) Touch is transformative: the giver and receiver are intertwined, which may enhance togetherness and closeness.(26)
Several touch-based therapies for PLWD have been investigated. Shiatsu showed benefits in decreasing depression.(27) Acupressure and slow-stroke massage demonstrated benefits for anxiety, depression, agitation, and pain.(28–32) Only one of these studies involved care partners. As cost and availability may limit access to care, care partners using even the simplest techniques with PLWD may help address this gap. Additionally, it may reinforce the rewards experienced by care partners.(33)
The benefits of decreased stress and enhanced well-being demonstrated with shiatsu(34,35) may translate to self-shiatsu. If so, self-shiatsu may, as shown in other populations,(36–39) be a cost-effective, convenient self-management tool for care partners. Self-management interventions enhance self-efficacy(40) which improves QoL.(4,41,42) Such interventions have been shown to improve mood, including depression,(40) which is of higher prevalence amongst care partners.(43) Focusing on well-being can raise awareness of one’s feelings(44) and sense of personhood which enables people to attune to others.(45) Potential benefits of self-shiatsu may extend to PLWD as well-being affects care partners’ ability to provide care(7,46) and their QoL is linked to that of their partners.(47–49)
Shiatsu, a Japanese bodywork, translates to ‘finger pressure’.(50) It uses comfortable pressure to maintain health and treat chronic and acute conditions.(51–53) It aims to correct and maintain the body’s physical structure while restoring and maintaining its energy.(51) Namikoshi shiatsu uses points “…that are most effective in treatment from the standpoint of contemporary anatomy and physiology”.(54) As such, it may be simpler for laypersons to learn some of its basic techniques, as understanding complex Traditional Chinese Medicine principles used in other shiatsu styles is unnecessary.
Though evidence for shiatsu is limited, studies have demonstrated benefits for: stress/anxiety, pain, muscle/joint issues, migraine, ability to cope, mind-body awareness, mobility, energy and mental clarity, and sleep disturbances.(34–36,38,39,55–59) These studies reported no adverse effects aside from mild, transient fatigue or achiness.(34) Shiatsu has been shown to be an intrinsically safe therapy in qualified hands(60) with numerous potential benefits.
The need for strategies to enhance QoL for care partners and PLWD is demonstrated in the literature.(61) So, too, is the need to comprehend how relationships of PLWD might be maintained and strengthened.(62) In dementia care support is needed for both parties,(63) through patient-centred and care partner–centred interventions.(7) An important aspect of self-management is working together as a couple.(64) This study uses one such approach aimed at both members of the dyad.
Touch enhances connection. Using touch through shiatsu may support connection and meaningful relationships, while self-shiatsu may ameliorate care partner well-being. PLWD experience psychosocial benefits from touch and massage: mental and tactile stimulation, non-verbal communication, nurturing, and companionship.(65) Using interpersonal touch with PLWD often benefits care partners, enhancing self-awareness and self-acceptance.(66) These points suggest shiatsu for care partners and PLWD is worthy of exploration.
This qualitative pilot study aimed to explore: the experience of self-shiatsu for care partners of PLWD, care partners’ experience of using shiatsu with their partners, and care partners’ perceptions of the impact of shiatsu on their relationship with their partner.
A qualitative methodology was used to explore participants’ perspectives and establish foundational knowledge.(67–69) An exploratory, descriptive/interpretive approach(68) aimed to understand how attitudes and behaviours of participants related to experience.(70)
Relational theory asserts that genuine connection is a human necessity.(71) Relationships are opportunities for meaningful interaction.(15) One’s sense of self is experienced relative to others and ability to connect contributes to it.(72) Non-verbal care can enhance connection for PLWD and care partners.(13) Relational theory provides an appropriate framework for viewing their shiatsu experience.
Potential participants were care partners and PLWD associated with the study site. These could include spouses/partners, adult children, family or friends as all relationships of PLWD provide opportunities for engagement and connection.(3)
Inclusion criteria for care partners were fluency in English and an association with the study site.
Exclusion criteria for care partners were conditions or injuries of the hands that would contraindicate performing shiatsu, such as severe osteoarthritis and an inability to learn the shiatsu routine to the researcher’s satisfaction. The latter criterion aimed to limit risk of harm for PLWD. Care partners were informed they would be excluded from the study should the researcher have concerns about their comprehension of, and ability to, execute the shiatsu routine. Exclusion criteria for PLWD were conditions such as contagious skin conditions, which would contraindicate receiving shiatsu to the areas in the routine.
Purposive sampling was used as a small purposively selected sample permits the researcher to explore experiences from the participants’ perspective.(73) As the study site’s members differed, it was felt that recruitment would result in varying characteristics, thus enhancing representativeness.
The study site, which provides programs for PLWD and their care partners, is associated with a large, urban health sciences centre. To protect participants’ anonymity, the study site is referred to as ‘the Centre’. It focuses on members’ abilities through arts, music, and movement-based activities that foster engagement and connection.
The Research Ethics Board (REB) of the health sciences centre and the Research Ethics Committee of Northern College of Acupuncture granted ethical approval. This study complied with all relevant guidelines related to ethical conduct of research involving human subjects.
Study requirements were carefully considered to prevent undue burden upon care partners. They were informed that participation was voluntary and they could withdraw at any time without compromising attendance at the Centre.
PLWD could provide informed consent or withdraw from the study at any time. If they lacked decision-making capacity, their substitute decision-maker could consent or withdraw on their behalf. If PLWD seemed unreceptive to shiatsu, care partners could cease using it with them while continuing in the study themselves.
Staff of the Centre invited care partners to participate in the study. Former members were informed through the Centre’s e-news and newsletter. Those who expressed interest were provided a consent form for care partners, outlining the study’s requirements and a consent form for PLWD, discussing their role in the study.
A small sample is suitable for descriptive, exploratory studies.(74) The goal was to recruit 10 care partner participants to elicit rich data while allowing for attrition.
Fewer participants than planned were recruited, possibly due to this researcher’s lack of involvement in Centre activities. Locating another site to ameliorate recruitment within the health sciences centre in a limited time frame was not possible. This study’s population likely influenced recruitment. Difficulties recruiting PLWD are common(75–77) and also pertain to care partners.(27)
Six care partner participants were recruited: five spouses/partners and one adult child. Five were female and one male, reflecting the gender imbalance amongst care partners of PLWD.(9) It also correlates with higher incidences of women’s participation in qualitative research(78) and of self-disclosure.(79) One participant was unresponsive to communiqués to schedule the first interview, so was considered withdrawn from the study. Another withdrew after the first interview due to their partner’s health. REB policy necessitated discarding this unanalyzed data. The four participants remaining completed the study.
The workshop had been presented for several organizations in recent years. Feedback from participants and organizers was positive. These workshops indicated 90 minutes was appropriate for learning the simplified shiatsu without imposing greatly on care partners’ time. A self-shiatsu procedure of comparable length and complexity was successfully taught to persons with chronic pain and veterans with sleep problems.(36,38,39)
The shiatsu routine to relieve stress was based on this researcher’s 17 years of clinical experience as a shiatsu therapist and took approximately 10 minutes. It included palm pressure to the eyes and finger pressure to 17 points on the base of the skull, side and back of the neck, and top of the shoulders.
The shiatsu routine for PLWD evolved through this researcher’s use of shiatsu with her father. While initially more comprehensive, it later focused on shoulders, arms, and hands to enable sitting side by side. This facilitated rapport and observance of facial expressions. This routine was simplified, so laypersons could learn and perform it in a shorter time. It included palm and thumb pressure to 30 points in the aforementioned areas and gentle stroking motions and took approximately 10 minutes. The areas included are accessible, are natural areas to give touch, and have been found to be the most acceptable areas to receive touch, regardless of the relationship of those involved.(80)
Care partners attended one of two 90-minute workshops at the Centre, facilitated by this researcher. This allowed adequate time to practice self-shiatsu and shiatsu for PLWD with another participant. An illustrated handout was provided for participants’ home reference. Care partners were instructed to avoid injured areas and to use extremely gentle pressure with PLWD. They were to stop if their partners appeared uncomfortable. Non-verbal signs indicating displeasure or discomfort for care partners to watch for were discussed. It was suggested that care partners use self-shiatsu and shiatsu with their partner daily or as often as comfortably fit their routines. Participants were instructed to contact the study team if they had questions or concerns.
This researcher carefully monitored participants, correcting point placement, demonstrating appropriate pressure, and answering questions. Significant expertise in evaluating participants’ comprehension over 12 years of teaching provided a solid foundation for the training in this study. All care partners learned both shiatsu routines to the researcher’s satisfaction.
One-to-one semi-structured interviews were conducted two and six weeks post-workshop by this researcher. Interviews were in-person in a private room at the Centre or by telephone to minimize care partner burden. Notes were made during and after interviews. All participants consented to the recording of their interviews to ensure accuracy.
To create a profile of each care partner, the interviews opened with demographical questions intended to put participants at ease before progressing to complex open-ended questions.(81) Questions aimed to elicit care partners’ perceptions of using self-shiatsu, using shiatsu with their partners, and their interactions while doing so. The interview guide was not pilot-tested.
Self-disclosure can establish common ground, encouraging rapport and openness.(82,83) This researcher’s experience using shiatsu with someone living with dementia was explained during the workshops to clarify the motivation for the study while building trust with participants.
Interviews were transcribed verbatim. Care partners reviewed a transcript of their interviews. Each confirmed these were accurate and contained no identifying information. A selection of interview excerpts was presented to each care partner; all consented to their use.
Participants were asked to maintain a self-report log, noting date and duration of their use of self-shiatsu and shiatsu with their partner. They could also include comments.
Thematic analysis was used to identify, analyze, and interpret meanings and themes in the data.(84) Analysis was inductive with categories derived from the data.(85) Open coding identified emergent codes within the text.(86) The constant comparative method illuminated connections and contrasts within the data.(87) To mitigate burden, participants were not asked to review findings.
Strategies to ensure accuracy and enhance the validity of findings were employed.(88) This researcher repeated data analysis several times to verify that categories and themes accurately reflected the data.(82) Self-report logs, while limited, created a small degree of methodological triangulation.(89) Researcher bias can detract from validity and was mitigated through multiple immersions in the data, discussion with peers, and significant self-reflection and consideration of personal beliefs. Basic qualitative descriptive studies aim to accurately summarize participants’ experience.(90) Researcher bias is less likely to influence this low-inference interpretation than other qualitative studies.
Despite the small sample, rich descriptive data(74) was gathered. Care partners’ experience of shiatsu was consistent between follow-up periods. Three participants maintained self-report logs: two with limited entries, one with frequent entries. Comments from these echoed interview comments, therefore they are referenced in relation to the interview data they support.
Anonymous descriptors were used rather than participants’ names. Care partners are referred to as CP1, CP2, CP3, and CP4.
Each interview lasted 45–60 minutes. Only CP2 chose in-person interviews. Participants were open about their experience with shiatsu and the broader care partner experience. Comments were frequently extremely negative or extremely positive, demonstrating a breadth of perspectives.
Care partner profiles provided context for their shiatsu experience, though no obvious relationship between aspects of them emerged (Table 1). All four care partners who completed the study were female. Three were spouses and one was an adult child. Of the PLWD, the three spouses were male while the one parent was female. The three couples cohabitated in their familial homes, while the mother had recently moved to a long-term care home.
Table 1
Summary of Care-Partner Demographics and Experience
Eighteen categories emerged from the data. Similar ones, grouped together, created four expansive themes: Enhanced Awareness, Integrating Shiatsu into the Relationship, Barriers and Facilitators, Potential and Possibility. The categories that occurred frequently and were most relevant to this study’s aims are discussed.
Participants’ experience of self-shiatsu varied considerably. Three sub-themes indicated an increased awareness of one’s self and one’s needs.
Two participants discussed feeling decreased stress and increased calmness, also noted in their self-report logs. Self-shiatsu provided them a release:
…it brings me back to…my physical body a bit more because I tend to be just in my head… I would say [it has] a calming effect . – CP3
…The one day I found it really helpful was when I blew my stack…so I… spent some time with [palm pressure over eyes] and the breathing, primarily, and it really did bring me down. – CP2
CP2 and CP3 also commented repeatedly on increased awareness or consciousness from self-shiatsu.
…It does definitely centre you for a little bit…I can’t quiet my mind very much…so something like this helps me a bit for the immediacy of it. – CP2
…it’s…this certain way of touching yourself that is not just some little instinctive thing…I do these particular things…there’s something about that that leads you into just being consciously aware of your body and you’re doing that for yourself. – CP3
When asked what taking time to do something for themselves felt like, responses provided insight into care partners ’ lives: ‘I don’t find that I’m doing things for myself that I should be doing… (CP4). And: ‘…I think I kind of have to make sure I’m looking after me, too’ (CP2). CP2 and CP3 were enthusiastic:
…[self-shiatsu] was also helpful because… we seem to get so busy doing other stuff… so in a way it was taking time just for me… it was good , yeah. – CP2
Well, good . Yeah! Really good, actually. Because I find that I don’t take the time to do things just for me. – CP3
CP1 felt very differently: But that isn’t something just for me… doing something for me means going out with my friends…or doing something where it’s completely amusing. - CP1
Reactions to shiatsu from PLWD varied:
I felt it did have good effect. Obviously, you know, that’s hard to measure…But I did feel like we navigated that…sort of bump of sundowning.–CP3
… I have tried it when he’s having what I would call one of his anxiety episodes, and I don’t think it has any effect…it doesn’t make him worse. – CP4
On the one occasion CP1 was able to use shiatsu with her partner:
…He seemed okay…right after that he… went to bed so it’s hard to say. He slept extremely well. – CP1
CP2 was unsuccessful using shiatsu with her partner. She stated: ‘I knew he wasn’t the type of person who did touchy-feely stuff.’ CP1 was emphatic that ‘[Shiatsu] was another chore for me to do and I’m already doing everything for him’.
CP3 felt quite differently:
It felt good because it felt like I could do something for her…it had a name, it had a structure to it…especially when she starts getting anxious and I could say ‘Hey mom, let me do this. It might feel good…’ – CP3
All participants felt using shiatsu had no effect on their relationship with their partner. Three noted their close relationships. Of these, CP3 wrote in her self-report log that shiatsu provided a sense of connection and at both follow-ups stated it ‘… creates a certain closeness.’
All participants made reference to how busy and stressful their lives are:
…We’re sort of like a glass that’s totally up to the brim and one more thing just goes over the edge… Anything that gets added in is slightly stressful and then it’s a matter of whether it feels…like it’s accomplishing anything at all…if not it’s easy to jettison it because there’s too many other things looking to be done. – CP1
…As his everyday 7/24 caregiver…I’m not looking to do more things. Already I dress him, shower him, shave him, assistance with the toilet. Already I do everything… – CP4
For three care partners, using shiatsu with their partners was not successful:
…At first, he was kind of, I would say jumpy, because it’s sort of gentle pressing… –CP4
While CP4’s partner became accustomed to the gentle pressure, two were unable to use shiatsu with their partners:
He just couldn’t settle . He just started to laugh.– CP2
…He sat down and he did that ‘phht, phht, phht’ thing and I thought I can’t do this now…Like he’s spun himself into some kind of a state, so I stopped. – CP1
While all participants stated shiatsu was easy to learn and straightforward to do, two also expressed a lack of confidence in using it:
I don’t know if what I was doing…was correct…I don’t have any confidence that I’m just not like a cowboy [laughter]…pretending to do it. – CP4
Well, I don’t know if I’m doing [self-shiatsu] right, obviously. – CP1
CP2 made an interesting comment about acceptability of shiatsu for PLWD and care partners: ‘I wonder if it’s something that if it was built in earlier…if it would be more natural?’
Two participants saw no benefit to self-shiatsu. CP4 said ‘I think I sort of find it neutral, maybe a bit positive…just below the skull area’. CP1 mentioned her dislike of it several times: ‘I find I am not one that likes to be manipulated or massaged’.
Participants noted the difficulty in fitting shiatsu into their busy routines. CP1 stated: ‘[Self-shiatsu is] difficult to fit in and it’s got to be when I’m alone and that isn’t that often’.
Regarding shiatsu with their partners:
…Normally it would be in the evening… [My husband] is often very, very restless at that time…So I am often very stressed because it’s the end of the day and I’m tired and I just desperately want him to settle down.– CP4
…Every time I did it, it was a one-off, because with someone with Alzheimer’s you can’t do something like that in a routine – you’ve got to do it when they’re receptive. – CP1
Two participants who found self-shiatsu beneficial noted its convenience several times: ‘Because it’s self-done then it’s really easy to do, isn’t it?’ (CP3). And:
…You can do this for three or four minutes and it’s okay. And that’s the other thing: you don’t need equipment, you don’t need other people… – CP2
Two participants frequently described shiatsu as a useful tool: ‘I think it’s definitely a good mechanism for caregivers’ (CP2).
So it sort of felt good to have a new piece of…you know something I could offer to do for her. – CP3
…it’s another tool…and I think having a lot of tools is good, but I think they have to make sense to you . – CP2
Participants’ thoughts on using shiatsu in the future varied:
…you know, I might do it…if I felt that I needed it for some reason as opposed to…I’d do this every day… – CP4
I hope that as she gets…frailer, it’s something I can draw on as something we can do together…I’m hoping that down the road that this is something I will have to offer even as she gets less able through the disease. – CP3
All participants felt shiatsu might hold potential for others living with dementia:
I can see this being something that would be nice for someone other than me…I don’t know, maybe it’s something that one of the kids could do with him… – CP4
I think I would tell [other care-partners] that it’s really worth trying …I think it’s definitely a good mechanism for caregivers. – CP2
…every Alzheimer’s patient is totally different… totally . So, another person might be enthusiastic about it and another one would…completely reject it. – CP1
In summary, two of the four participants found self-shiatsu beneficial: one on a daily basis, one when stressed. Only two were able to use shiatsu with their partners, one of which found it a positive experience. All four participants felt shiatsu holds potential for other care partners and PLWD. No adverse effects were reported.
Care partners experiences of self-shiatsu and shiatsu with their partners living with dementia and their perceptions of its impact on relationship quality illuminated a number of areas of interest. While different experiences were anticipated, the extensive range was surprising and suggests participants’ unique personalities and situations.
Given the often-stressful nature of the care partner experience noted in the literature,(7,33) and confirmed by participants, it is unsurprising that some felt shiatsu was an additional demand. Their stress, lack of time, and unmet needs emphasize the necessity of support, suggested by previous research.(1,7) Participants acknowledged this. Self-care solutions that fit their lifestyles are needed.
Self-shiatsu and shiatsu with their partners was negative and neutral for CP1 and CP4, respectively. They spoke frequently of stress and constant care-related tasks, which may have influenced their experience. For some, shiatsu with PLWD will be impractical as they manage countless responsibilities. Though two participants found self-shiatsu accessible, some may even find this unachievable, despite the need for approaches that ameliorate health and well-being. Using portions of the shiatsu routines may be less demanding and more manageable.
CP2 stated she would continue using self-shiatsu when stressed as it calmed her at these times. As care partners often feel stressed and overwhelmed,(9,33) an effective stress-relief strategy is valuable. Participants’ comments aligned with research noting their hectic lives.(33) Utilizing self-shiatsu as needed, rather than as a consistent regime, may be more appropriate and may be suggested in future studies, along with instruction on identifying stress.
CP3’s ability to use self-shiatsu daily may have been due to her mother living separately and the resultant increased support. CP2 and CP3, like the others, were stressed and busy. CP2 had the least support of all. Their benefits from self-shiatsu appear unrelated to their situations; it may simply have suited their needs and personalities.
CP3 indicated that self-shiatsu increased self-awareness and consciousness of her body. CP2 reported focusing on the self was helpful. With much time and energy focused on their partners and their own needs deprioritized,(11) this greater self-focus is a critical element of their self-shiatsu experience.
Self-awareness means understanding one’s feelings, thoughts, motivations, and limitations.(44) It enables us to attune to others.(45) Without focus on our well-being and needs, we can lose touch with our personhood, and consequently that of others.(45) Enhanced consciousness, awareness and self-focus may enhance care partners’ attunement to their partners while benefiting themselves. From the relational theory perspective, as our sense of self relies on our relation to others, attunement to ours and others’ personhood may contribute to authentic connection.(72)
Two participants found self-shiatsu a convenient tool, necessitating no equipment, other people or need to go anywhere. Self-shiatsu puts the user in control,(36) which one participant mentioned. This is noteworthy for care partners who may feel much is beyond their control, and corresponds to research on self-management interventions.(40)
CP2 and CP3 tailored self-shiatsu to suit them. Self-shiatsu’s adaptability may make it accessible to care partners with varying needs. Different coping strategies are used by care partners of PLWD in different situations.(10) For some, self-shiatsu may be a helpful strategy, perhaps like CP2 in stressful situations.
Care partner self-efficacy relates to confidence in coping with care-related responsibilities.(4) None spoke of lacking confidence; however, all participants indicated the stress and difficulty of managing care-related tasks. Self-care for chronic conditions can improve self-efficacy(40) and ongoing stress is considered a chronic condition. Self-efficacy impacts health-related QoL.(41,42) For the two who found self-shiatsu beneficial, it may enhance their self-efficacy and health-related QoL. As care-partner QoL is linked to that of their partner,(48,49) ameliorating it through self-efficacy may support them in their care partner role and also benefit PLWD.(4)
CP1 and CP4 spoke of lacking confidence in using shiatsu, though both noted it was easy to use and one stated the training was sufficient. As both frequently spoke of providing exhaustive care, their lack of confidence may have related to their care partner experience rather than the shiatsu training. Care partner distress is linked to numerous care hours.(43) This may have affected their ability to incorporate shiatsu.
CP3 stated it felt good to do something pleasing for her partner by using shiatsu. This aligns with rewards reported by care partners of PLWD: feeling good about oneself, feeling useful and close to their partner.(33) The care partner role can be meaningful, with satisfaction derived from the care provided and the relationship.(8) Some may feel, like CP3, that shiatsu with PLWD emphasizes the positive aspects of being a care partner which are noted in the literature.
CP3 used shiatsu with a parent and experiences differ between parents/adult children and spousal care partners.(46) She was no longer a full-time care partner, so support in care was considerable. CP3 and her mother did not cohabitate, so connecting with touch through shiatsu may have been more pronounced. These factors may have contributed to CP3’s favourable experience, however it may relate to feelings of helping her mother and their enjoyment of shiatsu. CP3 felt shiatsu created closeness and mutual engagement with her mother, as research on interpersonal touch has demonstrated.(17,26)
Resistance to touch therapies by PLWD has been reported in other studies. Variations in acceptability of foot massage from day to day and gender differences, with females responding positively and males negatively to hand massage, have been noted.(28,77) Interestingly, the PLWD who was receptive to shiatsu was female. The remaining three were male, two of whom were resistant.
Using shiatsu did not affect the quality of participants’ relationships, though CP3 noted enhanced connection. For PLWD feeling connected has demonstrated improved QoL.(3) CP3 also stated using shiatsu allowed she and her partner to ‘just be’. Touch as a way of being with PLWD has been noted by health-care workers.(19) The non-verbal nature of shiatsu, which CP3 remarked on, could be more valuable as dementia progresses and cognitive and verbal abilities change. Shiatsu could have greater benefit to communication and relation later in the dementia journey, as found with touch and massage.(25)
Recognizing and enhancing relationships is a way to maintain PLWD’s personhood.(7) Even in strong relationships, enhancing them may improve QoL and the dementia experience. Relationship quality impacts both members of the dyad as it also affects care partner well-being.(46) When using shiatsu with her mother CP3 felt close and connected. In one study, care partners felt connecting with their partners could improve their partners’ QoL and well-being.(16)
Relational theory states that interactions of people and experience influence one another.(15) Self-efficacy and emotional well-being present potential avenues for care partner support that would likely also benefit PLWD.(4) Care partners’ health impacts their ability to provide care.(7) Relieving stress and improving well-being, as self-shiatsu did for two participants, may enhance care and subsequently PLWD’s QoL. Improved well-being may also enhance interactions with their partners, thus improving relationships.
Regardless of participants’ experience, they noted shiatsu’s potential and possible different experiences for others. CP4 noted secondary care partners using shiatsu with PLWD might be preferable, suggesting it might suit their children. The one participant who successfully used shiatsu did so with her mother. CP3’s favourable experience aligns with literature suggesting different caregiving experiences between different types of relationships.(46)
Living situations are another consideration. Separation of spouses/partners can reduce communication and connection.(13) Touch through shiatsu may be helpful for those no longer cohabitating. CP3’s sense of connectedness when using shiatsu with her mother may have been deeper due to their separate living arrangements. Given their relationship, however, this may not have been an influence. All spousal care partners in this study lived with their partners, so exploring the impact of living situation on their shiatsu experience was not possible.
For PLWD, self-management approaches should aid in maintaining a sense of self.(64) Touch can reinforce our sense of self, both separate from and interrelated to others.(26) For some, using shiatsu together may assist in preserving PLWD’s selfdom. The connection and interaction it may provide, experienced by CP3, corresponds to relational theory: the individual’s need for experiencing relationships and mutual connection.(72) Using shiatsu may offer a mechanism for meaningful experience for some couples experiencing dementia, as we are shaped by and shape other’s experiences.(15)
There are several limitations to consider in relation to this study. Foremost is researcher bias, as with any study with personal motivation and experience. Also, this researcher was the sole data analyst. While steps were taken to mitigate researcher bias, it cannot be ruled out. Sampling bias and self-selection bias should be considered, as should gender bias, though there is a significant gender imbalance among care partners of PLWD.(9) While obsequiousness bias seems unlikely due to the numerous negative comments shared by participants, it cannot be dismissed. Though the results may be generalizable to many care partners and PLWD, cultures with varying attitudes to interpersonal touch may have different experiences. And finally, the small sample is a considerable limitation, making it unclear if data saturation was achieved.
Supportive, non-pharmacological approaches for care partners and PLWD that enhance QoL and relationships are needed.(7,61) This suggests further exploration of shiatsu for this population is warranted. Teaching shiatsu early in the dementia journey or teaching shiatsu to use with PLWD only after care partners have successfully adopted self-shiatsu may be more beneficial. Studies involving a larger sample may establish whether shiatsu could be a useful addition to their routines. PLWD’s perceptions of receiving shiatsu would be highly valuable. Exploring differences between PLWD who reside in long-term care homes and familial homes, and between spousal and adult children care partners, would be beneficial. Quantitative or mixed methods studies, including measurement tools to assess QoL or interpersonal connection, would also be illuminating.
This small qualitative study had several limitations; however, it contributes foundational knowledge in an as-yet unexplored area. A range of perspectives regarding the use of self-shiatsu and shiatsu with PLWD arose.
The findings show two care partners found no benefit to self-shiatsu, while the other two found it helpful. Two PLWD were resistant to shiatsu. One care partner found shiatsu with her partner was an enjoyable and beneficial experience. Two felt shiatsu added to the demands upon their time. Participants did not feel shiatsu with their partners affected the quality of their relationship, though one felt it created connection and closeness.
The findings of this study are inconclusive, however they illuminate the experience of shiatsu for this population. The study provides some insight into the lives of care partners and PLWD and the feasibility of adopting a tool such as shiatsu.
The author wishes to acknowledge the following people: The Director of the Centre for their guidance and expertise; Lisa Esmonde and Hina Patel for their thoughtful comments; the study’s participants for so openly sharing their experience; my husband for his unwavering support and understanding; and most of all, my father, for sharing his journey with me and inspiring this study.
The author declares there are no conflicts of interest.
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INTERNATIONAL JOURNAL OF THERAPEUTIC MASSAGE AND BODYWORK, VOLUME 15, NUMBER 1, March 2022