Sage Journals: Discover world-class research

Abstract

Participating in physical activity is beneficial for older people with dementia. Little is known however about the perceptions of people living with dementia undertaking an online-delivered exercise program. This study aimed to explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and factors that may influence acceptability to the program. An exploratory qualitative study design using semi-structured interviews was used. Data were recorded, transcribed verbatim, translated into English, and analyzed thematically. Twelve participants with dementia (mean age = 63.3 years) and 30 carers (26 family carers and 4 paid carers) (mean age = 37.9 years) were interviewed separately. Seven themes were identified: (i) Motivating factors to participate; (ii) Benefits for people with dementia; (iii) Impacts on carers; (iv) Challenges and enablers to exercising; (v) Carers’ strategies for exercise engagement; (vi) Roles, relationships and supports; and (vii) Participants’ receptiveness to online delivery of the exercise program. This study illustrated that an online-delivered exercise program was acceptable for people with dementia and their carers in Indonesia and reinforced the importance of carers’ support for the exercise program. These findings can help physiotherapists and other exercise practitioners in considering the aspects of delivery that people with dementia and their carers value in participating in online-delivered exercise programs.

Keywords

dementia exercise Indonesia qualitative exploratory online-delivery

Introduction

As the population continues to age, the number of people living with dementia worldwide is expected to grow markedly (United Nations, 2015). The total number of older people living with dementia worldwide currently is 55 million and over 60% live in low-and middle-income countries (LMIC) (World Health Organization, 2023). Prioritizing dementia care policy and research is extremely important, especially in LMIC that are currently experiencing rapid population aging (World Bank Publications, 2016; World Health Organization, 2021). In Indonesia, a LMIC, there are more than four million older people living with dementia which places Indonesia ninth globally for the number of people with dementia (Farina et al., 2023). The impact of this large growth in people living with dementia is likely to be substantial in Indonesia, partly because of the limited availability of health care and support services, as well as a lack of dementia care policy and effective management strategies (Mahendradhata et al., 2017). As the majority of people with dementia in Indonesia are cared for in the community by their families, the situation may be more challenging than for those in high income countries (Kadar et al., 2013) where greater care and community support options are often available.

Participating in physical activity has been shown to be beneficial for people with dementia, however older people with dementia have low physical activity levels compared with older people without dementia (Watts et al., 2016). Exercise is a structured form of physical activity that is a low cost and effective intervention that has been shown to result in significant benefits for psychological and physical health and well-being of older people with dementia (Forbes et al., 2015). Previous studies have reported that online-delivered exercise interventions are feasible as an alternative delivery method for increasing physical activity levels of older people with dementia and their carers in developed countries (Ptomey et al., 2019; Taylor et al., 2020). For the purposes of this study, “online-delivery” refers to delivering and evaluating the exercise program remotely (online) in real-time via videoconference (Weiss et al., 2020). This approach requires no travel commitment, less cost, and offers support for carer engagement to enhance participation by the person with dementia, as well as to increase reach for those living in rural areas (Ptomey et al., 2019). As such, the potential for health professionals to deliver exercise online for people with dementia, and how this may be supported by family carers in LMIC also merits attention. Factors such as acceptability of online exercise delivery, and perceived enablers and barriers to exercise participation need to be better understood from the perspectives of people with dementia and their carers, in order to better support sustained exercise participation (Weiss et al., 2020). Online-delivery methods have also been reported as a potential method to respond to the global COVID-19 pandemic to maintain health and well-being of older people living with dementia (Goodman-Casanova et al., 2020).

It has been recognized that individuals’ perceptions are important and need to be considered when implementing health program initiatives (Linsley et al., 2011), and obtaining information from people with dementia is essential to understand their needs and preferences (Clare et al., 2008). While considerable qualitative research exists investigating perceptions and experiences of people with dementia in undertaking exercise programs face-to-face (Karuncharernpanit et al., 2016; Lindelöf et al., 2017), little attention has been given to exploring perceptions in people living with dementia undertaking an online-delivered exercise program. Other factors that also warrant consideration when delivering exercise interventions include the cultural norms of a population. There may be local factors in LMIC in Asia that limit successful translation of these programs in the contexts of culture, environment, knowledge/preferences of consumers, and health care systems compared to high income countries (Chongsuvivatwong et al., 2011; Karuncharernpanit et al., 2016). Similar to many Asian countries, in the Indonesian culture, exercise is often perceived to be equated to household chores, such as cleaning and preparing meals, and ageing is often associated with rest and an avoidance of physical activity or exercise (Karuncharernpanit et al., 2016). Dementia in Asia is also often perceived as a normal part of aging and not a neurodegenerative disease (Alzheimer’s Disease International, 2014; Patel et al., 1998). It is not clear if the cultural norms of Indonesians affect their perceptions and experiences when participating in exercise. Therefore, the aims of this study were to: (1) explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and (2) determine factors that may influence their acceptance to exercises that are delivered online.

Method

Study design

This was an exploratory qualitative study design that took a descriptive approach using semi-structured interviews with low inference interpretation of phenomenon. Low inference interpretation is an approach used when aiming to reduce the researcher influence on the data interpretation, being strongly focussed on what participants state verbatim (Goins et al., 2021; Sandelowski, 2000). This study was part of a larger study with the same study participants that evaluated the feasibility of a home-based online-delivered exercise program for community-dwelling older people with dementia in Indonesia (Sari et al., 2023a). The online-delivered exercise program was conducted between January 2021 and July 2022, a period during the COVID-19 pandemic. During this time Indonesia was alternating between lockdowns where people were restricted to home and required to adhere to social distancing rules. The online-delivered home exercise program provided an alternative opportunity to exercise due to inability to engage in exercise in their community.

Sampling and recruitment

All participants in the home-based online feasibility exercise program were eligible for inclusion in this qualitative study. Inclusion criteria for older participants with dementia in the online-delivered exercise program were: (a) community-dwelling (living in Indonesia); (b) aged ≥60 years; (c) medical diagnosis of dementia (any type); (d) mild to moderate severity of dementia (score of 7–23 on the Telephone Mini Mental State Examination (MMSE)) (Newkirk et al., 2004); (e) ability to understand/follow instructions for exercises in the Indonesian language; (f) independent mobility (with/without a gait aid, but independent of human assistance); (g) no other major neurological history/medical conditions preventing exercise participation; (h) having a carer to supervise exercises; and (i) having a computer/tablet and internet connection. People with dementia with unstable medical conditions, or speech/hearing impairments that impeded participation in the online delivered exercise program were excluded.

For the online-delivered exercise study, carers included people who provided care to an older person with dementia (including family members and/or a paid carer). A paid carer in Indonesia is a person who is paid to help the family carer to look after the older person or the person with dementia, although they usually do not have a qualification or formal training in caring for older people or people with dementia (Schröder-Butterfill & Fithry, 2014). Inclusion criteria for carers were: (a) aged ≥18 years; (b) availability to participate in online exercise sessions; (c) able to supervise the person with dementia to exercise in-between online sessions; (d) familiarity with the participant’s medical conditions; and (e) ability to communicate with the person with dementia and the researcher in the Indonesian language. Carers were excluded if they had conditions preventing them from participating in the program (e.g., physical and/or other mental illness).

In the online-delivered exercise program, participants undertook an individualized home-based exercise program for 12 weeks, comprised of four online exercise sessions delivered via videoconferencing by the researcher who is a physiotherapist. Participants engaged by using either a computer, laptop, or tablet computer. Dyads were instructed to continue the home exercises five days/week, 20–30 minutes/day in-between the scheduled online visits in alignment with recommendations set out by Lam et al. (2018). This exercise program was modified from the Otago Exercise Programme, an exercise program for prevention of falls (https://www.livestronger.org.nz/assets/Uploads/acc1162-otago-exercise-manual.pdf) to ensure safety of the dyads. Modifications included exercising with a stable chair/bench on either side to use for steadying if required and standing with a wider distance between feet as required to ensure the participant’s safety. Exercise participation was encouraged and monitored for safety by the carer, who also received training by the researcher, adapting the approach and resources used by Suttanon et al. (2013) in the first online exercise visit. After the 12-week intervention, dyads were encouraged to continue the exercises for an additional six weeks without physiotherapist online visit/supervision.

People with dementia and their carers were recruited through the Alzheimer’s Indonesia Association newsletter, mailouts to the Alzheimer’s Indonesia members including people with dementia and their carers, local newspaper advertisements, local dementia and carer support groups, hospitals, community services for older people and social media. Interested people were asked to contact the researcher for further information.

Data collection and interviews

Individual semi-structured interviews were conducted between May 2021-April 2022, within seven days of completion of the 12-week exercise program or within seven days of withdrawal from the program (where applicable). Interviews were conducted using online platforms (e.g., zoom, WhatsApp video call), audio-recorded and transcribed verbatim. Interview transcripts were then translated into English by a professional translator and checked by YMS who is fluent in English and Bahasa. Interviews were conducted in Bahasa (Indonesian language) by the researcher (YMS). YMS is a native Indonesian, and was also the physiotherapist who administered the exercise program. During data collection, YMS acknowledged their positionality as an Indonesian trained physiotherapist, with clinical experience working with older people, including people living with dementia. Throughout the project, including analyses, the project team, comprising interdisciplinary professionals (physiotherapy, exercise science and occupational therapy), reflected on their diverse backgrounds and clinical and research experience with people living with dementia. Additionaly, one team member has personal experience with a parent living with dementia, offering insights into the associated important role and impact of carers in supporting individuals living with dementia.

An interview schedule was used, which was trialled to ensure questioning flow and clarity with older adults with dementia and their carers prior to being used in the study. Copies of interview schedules are available from authors on request. Participants with dementia and their carers were interviewed separately where possible. Questions for people with dementia or their carers explored their perceptions and experiences of (a) participating in the exercise program (e.g., program intensity and perceived changes to physical function and behavior); (b) online interactions with the physiotherapist, suitability and performance of technology for participating in online-delivered exercise sessions, exercise program support and program safety; (c) barriers and facilitators to participating in the online-delivered exercise program, and suggestions/preferences for future online-delivered exercise programs; and, (d) attitudes towards exercise in general. Both family and paid carers were asked additional questions about impacts on them from supervising/monitoring the exercise program. Paid carers were asked additional questions about their role, and impact of their participation in the exercise program on their usual role or duties. Participants with dementia and their carers who withdrew from the program were asked additional questions about reasons for withdrawal and preferences for future programs.

Ethics approval

Monash University Human Research Ethics Committee (Project ID: 22163) and Health Research Ethics Committee – Indonesia (No: 2856/B.1/KEPK-FKUMS/III/2020) granted ethics approval. All participants with dementia and carers were given a participant information sheet, provided with an opportunity to ask questions and then asked to sign a consent form prior to commencing study participation. All participants with dementia were assessed for their capacity to give consent using the Participant Cognitive Capacity Checklist (Hegde & Ellajosyula, 2016). Family carers were asked to provide written consent on behalf of the participants with dementia to participate, if the person with dementia was unable to provide informed consent. Ten participants with dementia (83.3%) were able to provide consent on their own.

Data analysis

Interview data were analyzed using reflexive thematic analysis in accordance with Braun and Clarke’s (2006) six-phase process to identify themes and patterns in the data. An inductive approach was used to generate themes from the “bottom up” and based on the meanings in the data (Braun & Clarke, 2021). Two researchers (YMS and AFL) independently undertook initial coding using NVivo software (version 20) after familiarizing themselves with the data, by reading interview transcripts multiple times. Initial codes were generated by highlighting systematically relevant words, phrases and sentences across each interview to then be collated for each relevant code. Codes with the same meaning were grouped into categories and collapsed to form themes (Braun & Clarke, 2022). Both researchers met several times to reflect on codes and the development and refinement of themes. The coding schedules and initial themes were also discussed with a third researcher (KH) to compare and collate analyses, leading to refinement of final themes. Quotes from the participants verbatim statement have been edited for grammar and readability.

A thematic map was developed to organize and establish the relationship among themes (Novak & Alberto, 2007). Analyses then included further discussion and review of the data and identified themes by the research team (YMS, AFL, KH, EB) and by maintaining detailed records of coding and theme development decisions (Shenton, 2004). All authors provided feedback before the confirmation of the final thematic map to generate the report.

Findings

The flow diagram of participant recruitment, withdrawals, and exclusions is shown in Figure 1. In our feasibility study from which participants for interviews were recruited (Sari et al., 2023a), 30 people with dementia and their 30 family carers, and 10 paid carers were involved. Of these, only 12 of the 30 people with dementia were deemed able to participate in the interview process, while 26 family carers, and 4 paid carers involved in part or all of the 12-week online-delivered exercise program were interviewed. Five interviewees, one person with dementia and four family carers, did not complete the exercise program and withdrew at weeks 5, 7, 8, and 10 of the exercise program. All participants with dementia and their carers were interviewed separately. Most participants with dementia were female (66.7%) with an average age of 63.3 years (range 61–87 years). Carers were predominantly family members (86.7%) and female (83.3%) with an average age of 37.9 years (range 19–62 years). Interview duration for persons with dementia ranged between 19–39 minutes and 24–42 minutes for carers. Most participants lived in outer regional areas (outside but within 150 km of a major city) (n = 12, 40%) or remote and very remote areas (n = 5, 16.7%). Details on participant demographics are shown in Table 1.

Figure 1.

Flow diagram of recruitment and exclusions.

Table 1.

Demographic characteristics of participants.

Person living with dementia (N = 12)										Carer (N = 30)								Residential location
ID	Sex			Dementia type		T-MMSE score	Dementia severity		Dementia duration (years)	Carer ID	Sex		Age	Relationship to person living with dementia
ID	M	F	Age	A	V	T-MMSE score	Mild	Mod.	Dementia duration (years)	Carer ID	M	F	Age	Wife	Daughter	Son	Grand daughter	MC	IR	OR	R/VR
WD01		√	66	√		14		√	1	WFC01	√		34			√				√
D02		√	87	√		12		√	3	FC02		√	37				√			√
D03	√		74		√	15		√	2	PC03	√		29					√
D04		√	72		√	19	√		0.5	FC04		√	22				√		√
										FC05	√		20			√				√
										FC06		√	34		√				√
										FC07		√	34		√						√
										WFC08	√		40			√			√
D09		√	72	√		15		√	3	FC09		√	40		√				√
										FC10		√	50		√						√
										PC11		√	24							√
D12		√	63	√		17	√		1	FC12		√	34		√			√
										FC13		√	34		√				√
D14		√	61		√	13		√	1.5	FC14		√	33		√						√
										WFC15		√	41		√					√
										PC16		√	19					√
D17		√	68	√		11		√	3	FC17		√	36		√			√
										FC18		√	40		√						√
D19	√		63	√		12	√		1	FC19		√	59	√						√
										WFC20		√	50		√					√
D21		√	71	√		20	√		0.5	FC21		√	47		√				√
										FC22		√	54		√					√
D23	√		61	√		18	√		0.5	FC23		√	62	√					√
										FC24		√	31		√						√
										FC25		√	52		√				√
D26	√		61		√	18	√		1	FC26		√	55		√					√
										FC27		√	40		√					√
										PC28		√	25					√
										FC29	√		38			√				√
										FC30		√	23				√			√
	4	8	68.1 (±7.8)	8	4	15.3 (±3.0)	6	6	1.9 (±1.4)		5	25	38.4 (±11.3)	2	17	4	3	5	8	12	5

Note. ID = Identification number where D represents individuals with dementia, FC indicates a Family Carer, and PC indicates a Paid Carer; and additional W indicated the participant withdrew from the program; M = Male; F = Female; A = Alzheimer’s; Disease; V = Vascular dementia; T-MMSE = Telephone Mini Mental State Exam; Mod. = Moderate. The severity of dementia determined by the T-MMSE (mild based on scores between 17-23; and moderate based on scores between 7-16); MC = Major City; IR = Inner Regional (outside, but near major city); OR = Outer Regional (outside but within 150 km of a major city); R/RV = Remote/very remote.

Seven themes were identified: (i) Motivating factors to participate; (ii) Benefits for people with dementia; (iii) Impacts on carers; (iv) Challenges and enablers to exercising; (v) Carer’s strategies for exercise engagement; (vi) Roles, relationships and supports; and (vii) Participants’ receptiveness to online delivery of the exercise program. Figure 2 illustrates the concept map of themes and sub-themes from the interview data and illustrative quotes for themes and subthemes are presented in the text below, with additional quotes provided in Table 2.

Figure 2.

Thematic map.

Table 2.

Themes, subthemes and additional illustrative quotes from participant interviews.

Theme	Subtheme	Illustrative quotes
Motivating factors to participate	Importance of meaningful activity	“I thought it will be good for me to maintain my health, and for me having some activities at home in this covid situation” (D23)
	Importance of meaningful activity	“I would like to participate in this program because I think exercise is good for my Mom especially in this COVID-19 situation when my Mom cannot do an activity outside” (FC21)
	Previous experience	“My husband was quite active joining exercise-related activities like cycling and he would like to keep being active at home” (FC23).
	Carer recommendation	“My daughter is the one who recommended me to do that. She said she got some information from her friend and my wife also support me to do that, so I thought why not to try?” (D03)
Benefits for people with dementia	Physical health	“I feel healthier now” (D21)
		“...I also walk stronger and have better balance since exercising” (D04)
		“I used to feel back pain, but since joining the program it feels better” (D26)
		“I feel that I become more flexible now, my joint becomes less stiff” (D02)
		“She becomes stronger and more independent, and it makes easier for me in assisting her daily activities” (PC16)
	Psychological health and wellbeing	“I feel more…hmm...more like excited, feeling refreshed as well. I also feel happier as my health also seems [to] improve” (D19)
		“… better appetite after joining the program, I eat more properly now” (D04)
		“I think my sleep is tighter and I wake up with fresh body. I less likely to wake up in the middle of the night” (D03)
		“She also less easily gets upset now and more enthusiastic in doing her daily activities” (FC04)
	Cognition and communication	“I got many advantages instead. For example, now we have activities we can do together to maintain her memory” (FC14)
		So, I just want to be healthier and remember better so I could communicate with people, that’s the important thing” (D26)
		“If we have short conversation with her, she could understand. That’s a change with time, I think” (FC11)
		“Now we can tell her what to do slowly and she understand. For example, when we told her to eat, she’s now able to walk to the dining table alone and eat. No more difficulty to ask her to eat at the dining table” (FC07)
Impacts on carers	Positive impact	“Participating in this program makes me learn to be more patient and being more compassionate in caring for my mom” (FC25)
	Positive impact	“I became more understanding with my mom’s condition and needs since I help my mom in this program, I learnt a lot about my mom’s behavior and I can set the strategy to deal with my mom mood, I am not saying I always succeed to handle it, but at least I understand more about her” (FC13)
	Negative impact	“Her reluctance to continue the program after a while, mood swings, tantrum, and seems unhappy with this, it affects me so much. Maybe I was lacking in patience, and it depleted my energy and it put more burden on me, persuading her to do it just making me frustrated and burns myself out” (WFC01)
Challenges and enablers to exercising	Enablers	“I don’t think I have a problem with it because my grandmother was willing to do it, she enjoys the program, and it was really great thing” (FC04)
	Challenges	“My shoulder sometimes got pain when I do some movements” (D03)
		“The challenge for me was in remembering the movements” (D19)
		“The biggest challenge was my mom’s mood swing” (C06)
		“The only challenge was my mother’s unwillingness to do the exercises” (WFC08)
Carer’s strategies for exercise engagement	Strategies	“I instruct her to do the movements” (FC14)
		“She usually forgets how to do the movements, so I give her an example of the exercise and it helped” (PC16)
		“Sometimes she made mistakes and I correct her with the right movement” (FC04)
		“I always remind my grandmother to do the exercises and follow the schedule (FC10)”
		“We needed to persuade her patiently so then she will keep doing the exercise, cheer her up or make her mood better to be able to invite her doing the exercise” (PC16)
		“I think that was kind of tricky thing to invite my mom to do the exercise, so the challenge was to be more patient to keep supporting her” (FC24)
Roles, relationships and supports	Presence of carer	“Hmm yeah... my daughter always supports me. She helps me always. Helps me preparing everything and accompany me when I am doing the exercise. And I think she always communicate with you [physiotherapist administering] to ask… ask something we do not know or something we are not sure about.” (D14)
	Support of physiotherapist	“I feel safe because I follow you as an expert to guide me. You always remind me and my daughter for me having a table to hold, and you also kept asking me how I progress, what I feel.” (D03)
		“We also can ask you anytime if I have any questions of concerns. So, I feel fully supported and safe.” (D09)
		“Yes, I feel that I got fully informed and got support from you [physiotherapist]. Sometimes we might forget the schedule of the visit and we got reminder regularly. I’m so thankful. You also provided us with helpful information and instruction for her [carer recipient] to exercise safely, must hold on to something, etc. We are also provided with exercise booklet, diary and video and feel supported and safe to do exercise at home.” (FC05)
		“Sufficiently informed, very informative. You provide us zoom visits and I got information that I need and I had access to ask question or to consult if I have any concern. You also provide with the exercise booklet which help a lot during the program. I also keep getting reminded to fill the diary. How my mom can do the exercise safely, with using handling and I should always be next to my Mom and monitor her while doing the exercise. So, I think we feel really safe in doing this with knowing what should we do to safely do the exercise.” (FC13)
	Support from another families/employer	“My employer is the one who always support me and was the one I talked to in supervising the exercise program”. (PC16)
	Enhanced connections/relationships between people with dementia and their carers	“I’m very happy and enthusiastic when my daughter comes to accompany me with exercises. I’m happy to have certain activity with my daughter, we could talk a lot while working out. (D21)
		“With doing the exercise, we had a good time together” (FC24)
		“It also strengthens our bonding, and we have intense relationship, and better communication” (FC29)
		“This activity brings us closer in our family relationship, maintaining our teamwork between me and my sister as the caregivers and my mom. We have been learning together since there are things Mother doesn’t understand so we have to be patient in giving instruction. We have stronger bond now that we spend a lot of time together” (FC05)
Participants’ receptiveness to online delivery of exercise program	Opportunity to engage	“I’m glad about this program method because even though we are living in the rural area we can also participate” (WFC20)
		“I think it (online method) has suited our needs. Especially in this pandemic outbreak, it is the most suitable and supportive method as we can be supervised by a physiotherapy over the distance” (FC14)”
		“I’m not good with technology and did not get used with the zoom app, but my employer (D03’s daughter) taught me how to use it and it was really helpful” (PC03)
	Technology-related issues	“I think at first it was a bit weird to meet you [physiotherapist] in a screen but I then I feel okay as I more regularly use it now even for seeing my family” (D12) “Yes, I can always hear you [physiotherapist] but for seeing you I need to get closer to the laptop” (D02)
	Preference for face-to-face delivery	“I prefer doing it face to face, directly meeting the therapist and receive direct instruction. With online method, I think we cannot get like direct assessment, or the physiotherapist cannot assess my Mom with touching her physically. My Mom also cannot see the physiotherapist directly which might have different effects to my Mom’s mood, she might like to see you face-to-face than only see you in the screen. Sometimes I saw her a bit confused to talk and respond to instruction from you via a screen, probably because the dementia that she has” (WFC01)
	Preference for face-to-face delivery	“If it is not in a pandemic outbreak, it will be better for Mom to meet her therapist directly” (FC24)
	Improvement opportunities	“And probably if we can have any face-to-face session between online session will be helpful. But I know it is not possible because of Covid, probably next time” (D03)
		“For suggestion, it will be great if we get at least 1 face to face session at the start of the program before we’re doing it” (FC12)
		“I think it would better to have like one video with continuous movements in one video. So, we just follow that” (FC24)
		“Maybe you can continue to visit us after the program ends or lengthen the program duration, so we have something to look forward to. We love it when someone is reminding us about the exercise because we tend to do something else when no one is reminding us of and ends up not doing the exercise” (C04)
		“It might be better if you add the number of visits, so you also can monitor us while we are doing the exercise more frequently” (FC13)

Theme 1: Motivating factors to participate

Participants, both people with dementia and their carers, identified similar factors motivating them to participate in the exercise program, with people with dementia also reporting additional motivators.

Importance of meaningful activity

Participants with dementia and their carers highlighted their belief that exercise was important and had benefits to people with dementia as their common motivation to participate in/supervise the exercise program. People with dementia also noted they were looking for activities that could be completed at home but were not able to find activities they could engage in, and therefore the exercise provided such an opportunity. “I thought that this program should be good for my health, and I want to join some activities, so I have some activities at home” (D19). A few family carers also mentioned they had been looking for a program for the person with dementia that they care for to participate in: “This is an activity I wish I could join from a long time ago and finally had a chance, especially in this COVID-19 pandemic and living in a small city where Physiotherapy is not common” (FC14). Additionally, the impact of the COVID-19 pandemic, particularly social isolation, was identified as a motivating factor to participate in the exercise program. Participants highlighted the need for alternative activities to keep them active while being restricted to staying at home.

Previous experience

Participating in previous exercise programs or exercise-related activities by people with dementia were factors for their motivation to participate in the exercise program: “I used to do jogging and join some exercises in a community centre for older people, and I would like to keep being active” (D21).

Carer’s recommendation

A number of participants with dementia mentioned their reason for participating in the exercise program was due to their family carer feeling it would benefit them or asking them to participate. “Actually, my wife was the one who informed and asked me to join this program and I thought this should be good to try” (D19).

Theme 2: Benefits for people with dementia

Participants with dementia and their carers identified some effects from the exercise program on physical and psychological health and wellbeing, and cognition for the person with dementia.

Physical health

Both people with dementia and carers identified benefits of the exercises on the physical health of the person with dementia, including feeling healthier, having better mobility and balance, reduced joint pain, improved flexibility, and increased functional independence. One person with dementia reported: “I feel a lot better and stronger now because I use my muscles a lot when exercising” (D03), while a carer stated: “I can see that she has been looking fresher and more energetic” (FC05).

Psychological health and wellbeing

Positive psychological changes of the person with dementia were identified by all participants. People with dementia reported feeling happier and excited, along with improved mood, appetite, and sleep. “I think my mood became better. I feel that I have been more passionate in doing that and other activities” (D12). Many of the family and paid carers also highlighted positive changes in care recipients’ behavior and psychological health including becoming less upset and having a brighter mood: “She has better behavior, less grumpy, looked energetic and happy now, it was together with her improved physical health, I think” (FC07).

Cognition and communication

A number of family and paid carers mentioned noticing improved cognition of their care recipient, particularly memory and communication. They also noted better ability for the person with dementia who they care for being better able to understand and respond to instruction. “Her memory and speech are now more eloquent, understandable, even though sometimes it doesn’t make 100% sense. She used to lose that ability, she cannot communicate well. Now we can tell her what to do slowly and she understands” (FC07), while another carer stated “He’s getting better in receiving and following instruction, he also responded well on the simple commands like, “let’s take a shower” “stand up” “let’s eat” and he responded like “what will we eat?” His ability to respond is getting better” (PC03).

Theme 3: Impacts on carers

Some carers reflected on the effects on themselves as a result of supporting someone with dementia to participate in the exercise program.

Positive impacts

Both family carers and paid carers reported being more patient and compassionate in caring for someone with dementia. They also highlighted becoming more understanding with the person with dementia, their condition and needs. Some family carers further identified being less worried to look after their care recipient, making them feel less stressed: “Now I feel more confident and less worried in looking after my Mom because she improved well, I also become less stressed out playing this role as a carer” (FC18).

Negative impacts

While some family and paid carer’s stress reduced, others expressed distress, increased stress and exhaustion having to assist the person with dementia in the exercise program. Paid carers did however also acknowledge that despite the stress on them, it was worth it to see the benefit of participating for the person with dementia. “I guess I got more exhausted. Usually she doesn’t want to move by herself and asks me to hold her when she tried to stand up, or when she doesn’t want to move, she’d just lean her full weight on me and that could make me tired. But seeing all the good impacts on her makes me happy too” (PC28).

Theme 4: Challenges and enablers to exercising

Challenges

People with dementia and their carers identified some barriers in undertaking the exercise program. Various factors for not wanting to exercise were expressed by people with dementia, including body pain, difficulty with some movements, or forgetting movements. Both family and paid carers highlighted the behavior of the person with dementia, including their mood, as challenging sometimes resulting in refusal to exercise. Some paid carers also expressed frustration, with one highlighting: “the challenge I found was sometimes she forgot the movements and I have to remind her again and again” (PC11). Carers, particularly family members, also acknowledged their own time and availability impacted their ability to support the person with dementia in participating in the exercise program. “The thing might be my availability as it was sometimes hard to find a time to help my Mom because of my other commitments” (FC12). People with dementia also reported challenges associated with doing the exercises, including: “There are some movements that are a bit challenging for me like turning around” (D09), and “Sometimes I just did not want to do that, was not in the mood to do that, or when I was tired” (D02)

Enablers

Most of the family and paid carers acknowledged the challenges in doing the exercise could be minimized, or avoided, depending on how receptive or compliant the person with dementia was. “I found no challenge at all; I think because my mother was willing and happy to do it. It will be a different story if she was reluctant to do it” (FC07). Some family carers also mentioned that additional support from a paid carer to motivate the person with dementia in the exercise program was beneficial. “The thing that really helpful was I have a paid carer who also helped me in supporting my mom to do the exercise” (FC10). People with dementia also expressed receptiveness to exercise that was linked to the reassurance and prompting provided by their carer. One person with dementia stated: “I usually forget about the movement and sometimes I forget that I need to do it (the exercise) that day, but my daughter always helps and reminds me, so all was good because of her” (D12).

Theme 5: Carer’s strategies for exercise engagement

Family and paid carers highlighted developing strategies that assisted them to support people with dementia including instructing the exercise, initiating/giving example of the exercises, correcting movements, or reminding and inviting the individual to do the exercises. Some carers also noted some strategies for maintaining adherence of the program, including sharing the carer role with another person “because I have no spare time for something else, I switch with my sister in helping my Mom doing the exercises. So, we just share responsibility to maximize our support to my Mom and maintaining her participation” (FC05). Persuading the person with dementia to do the exercises and being more patient in supporting the person with dementia was also noted by some family and paid carers as strategies for maintaining adherence to the exercise program “It needed extra effort from us as the carers to invite him (participant with dementia), [we] (i.e., carers) should be more patient, (we need to) stabilize our mood also, otherwise we can be stressed out and will not be able to continue the program” (FC25).

Theme 6: Roles, relationships and supports

Presence of carer

All participants with dementia reported feeling supported and safe while undertaking the exercise program due to the presence, assistance and availability of their family and/or paid carer while they were exercising. One person with dementia noted “Yes, I feel safe as my wife [was] always there with me, helping me. You [physiotherapist] also told my wife how to do the exercise correctly and safely” (D19).

Support of physiotherapist

In addition to the reassuring presence of their carer, participants with dementia acknowledged the support from the physiotherapist who delivered the exercise online. “I also feel supported from you. You always visited (online), reminded, and taught me about the exercise” (D21). Physiotherapist support was highlighted across a number of formats, including the exercise session with the physiotherapist, ability to consult directly and specifically with the physiotherapist, and also the prompts and instructions about the exercises provided by the physiotherapist. Both family and paid carers also reported feeling reassured they were supporting their care recipient correctly and safely due to the physiotherapist’s advice in undertaking the exercise as it was conducted, as well as additional guidance provided via the exercise booklet, diary and video availability.

Support from other family/employer

Some family carers mentioned they received support from other family members, and some paid carers mentioned they received support (e.g., technology support) from their employer (i.e., the family carer of the participant with dementia) in supervising the exercises. “All of my siblings support us in doing this exercise program and we are always sharing her (participant with dementia) progress in this exercise program and changes to her health condition” (C06).

Enhanced connections/relationships

Several people with dementia expressed the joy they got from the exercise program as it meant they spent more time together with their carers. “I do that together with my daughter who always helps me with the exercise. So happy that I spent more time with my daughter” (D09). Many family and paid carers also acknowledged better connections between them and the person with dementia they care for, either during the program or as a result of the program. “I got additional experience between me and the person I look after and it makes our relationship even better” (PC03). As a result of a better relationship between them, family carers felt the person with dementia seemed happier and more responsive to them when they had time together, in addition to improved relationships between all family members as a result of participating in the exercise program.

Theme 7: Participants’ receptiveness to online delivery of exercise program

Opportunity to engage

Almost all participants, both people with dementia and their carers, mentioned having a positive experience using the videoconferencing platform to deliver the exercise program. Most people with dementia said the exercise program was good and suited their needs. “I think this is already good enough and suits me” (D04). Both family and paid carers also acknowledged similar recognition of the program: “This is a really good program for sure, with positive experience as well” (FC07). Most participants reported that the online delivery enabled opportunity to exercise conveniently at home, particularly due to Covid implications. “We can do (exercise) at home without traveling outside, we also can save our time and (this is) also safe for my Mom in this Covid situation” (FC17).

Technology-related issues

Most participants experienced little or no issues using technology to access the exercise program. However, a few family carers and people with dementia experienced problems with the online exercise approach, including internet connection issues, visual issues, and audio issues: “I think just a little problem on the signal sometimes” (FC25); and “I think I had several times that I cannot hear you (physiotherapist) clearly” (D03). However, all mentioned any issues were minor and did not impact their overall participation. “That was just a very small problem, and it did not bother me” (D03). Individuals with dementia highlighted they could only attend the online exercise sessions because the family carers assisted them with technological requirements. “I do not think I have any problem with that because my daughter always helped me. But without my daughter, it might be a lot of problem” (D09). Paid carers similarly mentioned the support of their employer (family carers) to assist them with the technology. A small number of people with dementia initially reported feeling unusual when exercising through the technology modality, but this resolved as they became more used to the online-delivered exercise program.

Preference for face-to-face delivery

Despite the benefits of the online delivery method used, especially in the COVID-19 situation, many people with dementia and their carers mentioned their preference for face-to-face delivery of the exercise program. “I think it helps me a lot in this kind of situation but if I can choose, I prefer face-to-face” (D23). Persons with dementia noted various reasons for preferring face-to-face, including “[With face-to-face method] I can communicate with the experts, can go outside and socialise with other people. Sometimes there are some limitations if we just meet online and not seeing each other” (D03). Several participants with dementia, and both family and paid carers highlighted having a hybrid delivery including both face-to-face visits with online could be helpful in the future. “Maybe it will be good in the future if there is no longer a pandemic, the program could be made available combining online with face to face” (FC05).

Improvement opportunities

A few participants with dementia suggested having music while exercising: “Probably movements with music will help to improve the participation. I like some songs but it was really hard to find it now” (D02). Family carers also suggested a video recording of each exercise for subsequent review, particularly when the physiotherapist was not available, as well as ongoing, frequent supervision from the physiotherapist subsequent to completion of the formal exercise program to aid adherence.

Discussion

In this study, experiences, perceptions and factors that influenced the acceptance of an online-delivered exercise program were explored with people living with dementia and their carers in Indonesia. While there is growing evidence exploring participants with dementia’s experience in participating in exercise programs (Karuncharernpanit et al., 2016; Lindelöf et al., 2017), limited evidence was found in Indonesia and other developing countries in Asia (Sari et al., 2023b).

Participants acknowledged benefits of the online-delivered exercise program on physical and psychological health of the people with dementia. The benefits reported in this qualitative study align with objective outcomes from this study (Sari et al., 2023a), including improved physical activity levels, improvement in some aspects of function and disability, exercise enjoyment and quality of life. Other studies on online-delivered exercise programs have also reported benefits, including increasing levels of moderate physical activity in both people with dementia and their carers (Ptomey et al., 2019) and improved falls efficacy for the person with dementia (Taylor et al., 2020). Even though this online exercise program was conducted during the height of the COVID-19 global pandemic, this approach is likely to be a suitable longer-term option beyond any remaining impacts of the pandemic. It may be useful for some older people who will have ongoing reluctance to resume interactions for physical activity participation that involve being away from home or older people who are living in rural areas in Indonesia.

While some carers mentioned the positive impact of supervising the exercise including being more patient and compassionate in caring for someone with dementia, negative impacts were also reported, including distress and exhaustion. Other studies have also found people with dementia often have more care needs (Wang et al., 2022), and that families or carers of people with dementia often experienced more distress, were more vulnerable to suffering from anxiety and depression, and potentially suffer more physical health problems than families or carers of people without dementia (Liu et al., 2017; Pinquart & Sörensen, 2003).

People with dementia stated they felt supported by both their family and paid carers presence and identified that the exercise program also enhance their relationship between each other. Family have been described as the “most important support system for older people in Indonesia” (Kadar et al., 2013). Some factors including the filial piety notion in most countries in Asia, including Indonesia, mean the family and relatives of older people are often more willing to care for older people at home and the care is organized by the joint family system (Wang et al., 2022). A study in China found that 80% of people with dementia are looked after by their families at home (Xiao et al., 2014). In our main feasibility study (Sari et al., 2023a) from which the interviewees were recruited, a third of the people with dementia also had a paid carer supporting their care at home, including supporting their participation in the exercise program. Research in China shows that having a paid carer or adding the number of helpers looking after the person with dementia reduces the impact experienced by a sole family carer (Wang et al., 2022). Overall, interview responses of carers were generally similar whether they were a paid carer or unpaid family carer. Additional supports to family carers of people with dementia such as employing a paid carer may assist with family carers’ high level of anxiety and depression, and provide additional resources to enable participation by the person with dementia in additional activities, such as exercise programs. However, having sufficient resources to fund a paid carer position is a challenge for a high proportion of families in Indonesia because of the low socioeconomic status of much of the population (Abia Asha & Juliannisa, 2023). There is a need for further research investigating the use, roles and outcomes associated with paid carers for people with dementia in Indonesia.

This current study highlights some challenges in participating in this online-delivered exercise program by people with dementia, including physical, functional and other limitations associated with comorbidities, forgetting movements, or not wanting to exercise. Barriers to exercise in people with dementia have been identified previously, including people with dementia’s perspectives about exercise, memory impairment, limited support, lack of knowledge how to exercise and fear of injury (Freeman et al., 2022; Watts et al., 2016). Carers highlighted the behavior of the person with dementia, including their mood, as challenging sometimes resulting in refusal to exercise. Cheng (2017) suggested that the most common challenges experienced by carers of people living with dementia relate to Behavioral and Psychological Symptoms associated with Dementia, as they can substantially contribute to distress for the carer. A study by Royse et al. (2023) identified that positive social influences and the desire to spend time with family members can mitigate the challenges of older people in engaging in exercise. The factors in motivating older people to exercise can inform future programs in designing the online-delivered exercise program for people with dementia.

This study also identified enablers to participating in the exercise program, including carer availability and support in exercise adherence and motivation of the program. Previous studies indicated that support from carers is an essential part of successful program participation for people with cognitive impairment and dementia (Suttanon et al., 2013; Taylor et al., 2004). An ethnography study also identified that caring for older parents or family members is a cultural duty for all family members in Indonesian society, which is also in line with religious values (Schröder-Butterfill & Fithry, 2014). Being a caregiver of their loved one in Indonesia might be interpreted as gratitude and as a natural consequence of kinship ties and moral values (Putri et al., 2022).

People with dementia and their carers were receptive to online delivery of the exercise program in this study. They perceived they had an opportunity to engage despite living in rural areas and during the COVID-19 pandemic. COVID-19 has left many older people, including those with dementia, restricted to home, with few resources and limited opportunities to participate in physical activity or exercise in the community (Goethals et al., 2020; Prevention, 2019), and online-delivered exercise programs have been recognized as providing an opportunity for exercise to be initiated and continued within the home, despite the barriers imposed by the pandemic (Goodman-Casanova et al., 2020). Participants with dementia and their carers also felt supported in this exercise program and valued the additional guidance provided via the exercise booklet, diary and video availability. The acceptability of the exercise programme is consistent with findings from other studies in developed countries. Taylor et al. (2020) reported that an individualized tailored exercised program delivered through tablet computers was acceptable and scored well on enjoyment for older people with dementia in Australia.

An interesting finding in our study was that while the majority of participants with dementia and their carers perceived that exercise delivered by the online-delivery method was acceptable and met their needs, they preferred to have a face-to-face delivery or have face-to-face visits as part of the program, especially if the COVID-19 pandemic was controlled, so they could meet the physiotherapist and communicate directly. This preference also aligned with a study by Lindelöf et al. (2017) for people with dementia who resided in nursing homes. They identified meeting exercise supervisors individually or meeting other people in the group exercise program was beneficial because they experienced feelings of being understood, seen and respected. Having a face-to-face meeting with physiotherapists and other peers in group exercise may improve their motivation and self-efficacy in participating in the exercise program and is worth considering incorporating into future hybrid online exercise programs. In addition, participants with dementia in this study reported not being able to participate in this program without the carer’s assistance in digital skills. Carers in this study generally managed the technology well, with some guidance from the physiotherapist through the online communications and initial orientation session. However, lower levels of digital literacy and skills, and reduced access to computers and stable internet may impact this online exercise approach being widely implemented across Indonesia and other LMIC. A study in India by Rasekaba et al. (2022) demonstrated the low rate of digital and health literacy, and low use of the internet to contact health professionals. They also found that low digital usage was potentially due to limited exposure and confidence in using digital devices and physical aspects of ageing, like poor vision.

Strengths and limitations

There were several strengths to this study. This is the first study in Indonesia to explore experiences of older people with dementia and their carers participating in an online-delivered exercise program, and carers who participated in this study were reflective of the common care arrangement seen in Indonesia, being a mix of family carers and paid live-in carers. In addition, the interviews were conducted by the primary researcher who is a native Indonesian who has an understanding of the cultural sensitivities in Indonesia. A limitation of this study was that participants were limited to those who could afford the relevant technology and internet access, and had sufficient digital skills to navigate the internet, which may limit generalisability of study findings in Indonesia. The authors also acknowledge reliability of the findings may be limited given the interviewer was the same person as the physiotherapist involved in delivering the intervention. While participants in the interviews may have responded differently with an independent interviewer, it is noted that the responses obtained were not solely favourable, with some carers highlighting the added workload, and preference for the program to be face-to-face, indicating participants were able to respond in an open manner with the interviewer about their experience. To offset any potential bias to some degree, the interviewer focussed on being as objective as possible with questions and prompts during interviews, and an independent coder reviewed all English transcripts in depth.

Conclusion

This study provided important insight on the experiences of older people with dementia and their carers and illustrated that an online-delivered exercise program was acceptable for people with dementia and their carers in Indonesia and reinforced the importance of carers support in the exercise program. The findings can help physiotherapists, exercise physiologists, and other health professionals in delivering online exercise programs to older people with dementia and their carers. It highlighted some challenges and enablers in undertaking exercise by people with dementia and their carers via this method. Future studies may consider using a hybrid format i.e., combining online with some face-to-face sessions in delivering exercise programs and examining the benefits of this mode of exercise delivery.

Footnotes

Acknowledgements

We would like to thank all participants involved in this study and Alzheimer’s Indonesia for their support in the recruitment process of this study.

Declaration of conflicting interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Yulisna Mutia Sari was funded by an Australia Awards Scholarship for her PhD study and Associate Professor Elissa Burton was supported by a National Health and Medical Research Council Investigator Grant.

Ethical statement

ORCID iDs

Yulisna Mutia Sari

Keith D. Hill

Elissa Burton

Den-Ching A. Lee

Aislinn F. Lalor

Data availability statement

The data underlying this article cannot be shared publicly due to the privacy of individuals that participated in the study. The deidentified interview data can be made available on reasonable request to the corresponding author.

Author Biographies

Dr. Yulisna Mutia Sari, PhD is a physiotherapist, researcher and lecturer. She has expertise in gerontology, geriatric physical therapy, and exercise for older people and older people with dementia. She is currently an Assistant Professor at Herb-Feith Indonesian Engagement Centre at Monash University Indonesia and research division committee at Alzheimer’s Indonesia, Indonesia. She completed her PhD from the Rehabilitation, Ageing and Independent Living (RAIL) research center, School of Primary and Allied Health Care, Monash University, Australia and now appointed as an adjunct research fellow at RAIL.

Professor Keith Hill, PhD is the Inagural Director of a research centre at Monash University (Rehabilitation, Ageing and Independent Living Research Centre), since July 2019. He is a physiotherapist and senior researcher, with 40 years clinical experience in rehabilitation and aged care, and an extensive track record in implementing and completing a broad range of research programs for older people in the community, hospital and residential aged care settings. He is most well-known for his research in areas of falls prevention, rehabilitation, physical activity / exercise, and assessment of physical performance. He has a strong focus on inter-disciplinary research, and has current or recent research collaborations in Indonesia, Singapore, Hong Kong, Malaysia, Canada and Brazil.

Dr. Den-Ching Angel Lee, PhD is a Research Fellow at the Rehabilitation, Ageing and Independent Living (RAIL) Research Centre and the National Centre for Healthy Ageing at Monash University. Her primary research interest is in falls prevention in the aged and rehabilitation. She has a professional background in physiotherapy, and has worked in clinical and advisory roles within health services and community health. Her research expertise lies in the fields of gerontology and evidence-based practice.

Associate Professor Elissa Burton, PhD is a Associate Professor at the Curtin School of Allied Health and the enAble Institute at the Curtin University. She is a sport scientist and her research focus is on healthy ageing and helping older people to stay living independently for as long as they choose. She is a current NHMRC Investigator Grant holder. She has been invited to join research teams in Ireland and Canada, holding a Health Research Board grant (Ireland) and a Michael Smith Foundation for Health Research grant (Canada).

Dr. Aislinn Lalor, PhD is an occupational therapist, lecturer and research fellow at Monash University, Australia. Aislinn is currently also a part-time research fellow with the Rehabilitation, Ageing and Independent Living (RAIL) Research Centre at Monash University with conjunction with the National Centre for Healthy Ageing. Aislinn’s research is predominatly focused towards adults and older adults and healthy ageing, with additional interest in sleep, disability, carers / caregivers / care-partners and the impact dogs can have on the health and wellbeing of people’s lives. Aislinn is particularly interested in qualitative research methodologies and collaborative and inclusive research opportunities.

References

Alzheimer’s Disease International . (2014). Dementia in the Asia Pasific region. Retrieved May 23 from. https://www.alz.co.uk/adi/pdf/Dementia-Asia-Pacific-2014.pdf

Abia Asha

Juliannisa

I. A.

(2023). Analysis of socio-economic conditions in 34 provinces Indonesia. International Journal of Research in Business and Social Science, 12(3), 297–307. https://doi.org/10.20525/ijrbs.v12i3.2563

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Braun

Clarke

(2021). Conceptual and design thinking for thematic analysis. Qualitative psychology (Washington, D.C.), 9(1), 3–26. https://doi.org/10.1037/qup0000196

Braun

Clarke

(2022). Thematic analysis: A practical guide. Sage Publications.

Cheng

S.-T.

(2017). Dementia caregiver burden: A research update and critical analysis. Current Psychiatry Reports, 19(9), 1–8. https://doi.org/10.1007/s11920-017-0818-2

Chongsuvivatwong

Phua

K. H.

Yap

M. T.

Pocock

N. S.

Hashim

J. H.

Chhem

Wilopo

S. A.

Lopez

A. D.

(2011). Health and health-care systems in Southeast Asia: Diversity and transitions. Lancet (London, England), 377(9763), 429–437. https://doi.org/10.1016/S0140-6736(10)61507-3

Clare

Rowlands

Bruce

Surr

Downs

(2008). ‘I don't do like I used to do’: A grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. Social Science & Medicine, 66(11), 2366–2377. https://doi.org/10.1016/j.socscimed.2008.01.045

Farina

Jacobs

Turana

Fitri

F. I.

Schneider

Theresia

Docrat

Sani

T. P.

Augustina

Albanese

Comas-Herrera

Du Toit

Ferri

C. P.

Govia

Ibnidris

Knapp

Banerjee

(2023). Comprehensive measurement of the prevalence of dementia in low- and middle-income countries: STRiDE methodology and its application in Indonesia and South Africa. BJPsych open, 9(4), e102. https://doi.org/10.1192/bjo.2023.76

10.

Forbes

Blake

Thiessen

Forbes

(2015). Exercise programs for people with dementia (Review). Cochrane Database Systematic Review, 2015(4), CD006489. https://doi.org/10.1002/14651858.CD006489.pub4

11.

Freeman

Pelletier

Ward

Bechard

Regan

Somani

Middleton

L. E.

(2022). Factors influencing participation in physical activity for persons living with dementia in rural and northern communities in Canada: A qualitative study. BMJ Open, 12(6), e060860. https://doi.org/10.1136/bmjopen-2022-060860

12.

Goethals

Barth

Guyot

Hupin

Celarier

Bongue

(2020). Impact of home quarantine on physical activity among older adults living at home during the COVID-19 pandemic: Qualitative interview study. JMIR Aging, 3(1), e19007. https://doi.org/10.2196/19007

13.

Goins

R. T.

Anderson

Minick

Daniels

(2021). Older adults in the United States and COVID-19: A qualitative study of perceptions, finances, coping, and emotions. Frontiers in Public Health, 9, Article 660536. https://doi.org/10.3389/fpubh.2021.660536

14.

Goodman-Casanova

J. M.

Dura-Perez

Guzman-Parra

Cuesta-Vargas

Mayoral-Cleries

(2020). Telehealth home support during COVID-19 confinement for community-dwelling older adults with mild cognitive impairment or mild dementia: Survey study. Journal of Medical Internet Research, 22(5), e19434. https://doi.org/10.2196/19434

15.

Hegde

Ellajosyula

(2016). Capacity issues and decision-making in dementia. Annals of Indian Academy of Neurology, 19(Suppl 1), 34–39. https://doi.org/10.4103/0972-2327.192890

16.

Kadar

Francis

Sellick

(2013). Ageing in Indonesia – health status and challenges for the future. Ageing International, 38(4), 261–270. https://doi.org/10.1007/s12126-012-9159-y

17.

Karuncharernpanit

Hendricks

Toye

(2016). Perceptions of exercise for older people living with dementia in Bangkok, Thailand: An exploratory qualitative study. International Journal of Older People Nursing, 11(3), 166–175. https://doi.org/10.1111/opn.12091

18.

Lam

Huang

M.-Z.

Liao

L.-R.

Chung

R. C.

Kwok

T. C.

Pang

M. Y.

(2018). Physical exercise improves strength, balance, mobility, and endurance in people with cognitive impairment and dementia: A systematic review. Journal of Physiotherapy, 64(1), 4–15. https://doi.org/10.1016/j.jphys.2017.12.001

19.

Law

Lam

F. M.

Chung

R. C.

Pang

M. Y.

(2020). Physical exercise attenuates cognitive decline and reduces behavioural problems in people with mild cognitive impairment and dementia: A systematic review. Journal of Physiotherapy, 66(1), 9–18. https://doi.org/10.1016/j.jphys.2019.11.014

20.

Lindelöf

Lundin-Olsson

Skelton

D. A.

Lundman

Rosendahl

(2017). Experiences of older people with dementia participating in a high-intensity functional exercise program in nursing homes: “While it’s tough, it’s useful”. PLoS One, 12(11), e0188225. https://doi.org/10.1371/journal.pone.0188225

21.

Linsley

Kane

Owen

(2011). Nursing for public health : Promotion, principles, and practice. Oxford University Press.

22.

Liu

Shi

Wang

Zhou

Liu

(2017). Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China. Journal of Clinical Nursing, 26(9-10), 1291–1300. https://doi.org/10.1111/jocn.13601

23.

Mahendradhata

Trisnantoro

Listyadewi

Soewondo

Marthias

Harimurti

Prawira

(2017). The republic of Indonesia health system review (Vol. 7). WHO Regional Office for South-East Asia. https://apps.who.int/iris/handle/10665/254716

24.

Newkirk

L. A.

Kim

J. M.

Thompson

J. M.

Tinklenberg

J. R.

Yesavage

J. A.

Taylor

J. L.

(2004). Validation of a 26-point telephone version of the mini-mental state examination. Journal of Geriatric Psychiatry and Neurology, 17(2), 81–87. https://doi.org/10.1177/0891988704264534

25.

Novak

Alberto

(2007). Theoretical origins of concept maps, how to construct them, and uses in education. Reflecting Education, 3(1), 29–42.

26.

Patel

Pereira

Coutinho

Fernandes

Mann

(1998). Poverty, psychological disorder and disability in primary care attenders in Goa, India. The British Journal of Psychiatry: Journal of Mental Science, 172(6), 533–536. https://doi.org/10.1192/bjp.172.6.533

27.

Pinquart

Sorensen

(2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58(2), P112–P128. https://doi.org/10.1093/geronb/58.2.p112

28.

Prevention

U. S. C. f. D. C. a.

(2019). Coronavirus disease 2019 (COVID-19) – older adults. Retrieved February 16 from. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/older-adults.html

29.

Ptomey

L. T.

Vidoni

E. D.

Montenegro-Montenegro

Thompson

M. A.

Sherman

J. R.

Gorczyca

A. M.

Greene

J. L.

Washburn

R. A.

Donnelly

J. E.

(2019). The feasibility of remotely delivered exercise session in adults with Alzheimer’s disease and their caregivers. Journal of Aging and Physical Activity, 27(5), 670–677. https://doi.org/10.1123/japa.2018-0298

30.

Putri

Y. S. E.

Putra

I. G. N. E.

Falahaini

Wardani

I. Y.

(2022). Factors associated with caregiver burden in caregivers of older patients with dementia in Indonesia. International Journal of Environmental Research and Public Health, 19(19), Article 12437. https://doi.org/10.3390/ijerph191912437

31.

Rasekaba

T. M.

Pereira

Rani G

Johnson

McKechnie

Blackberry

(2022). Exploring telehealth readiness in a resource limited setting: Digital and health literacy among older people in rural India (DAHLIA). Geriatrics, 7(2), 28. https://doi.org/10.3390/geriatrics7020028

32.

Royse

L. A.

Baker

B. S.

Warne-Griggs

M. D.

Miller

Weitzel

K. J.

Ball

S. D.

Duren

D. L.

(2023). “It's not time for us to sit down yet”: How group exercise programs can motivate physical activity and overcome barriers in inactive older adults. International Journal of Qualitative Studies on Health and Well-Being, 18(1), Article 2216034. https://doi.org/10.1080/17482631.2023.2216034

33.

Sandelowski

(2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340. https://doi.org/10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g

34.

Sari

Y. M.

Burton

Lee

D. C. A.

Hill

K. D.

(2023a). A telehealth home-based exercise program for community-dwelling older people with dementia in Indonesia: A feasibility study. International Journal of Environmental Research and Public Health, 20(4), 3397. https://doi.org/10.3390/ijerph20043397

35.

Sari

Y. M.

Hill

K. D.

Lee

D. C. A.

Burton

(2023b). Effectiveness of exercise programmes in improving physical function and reducing behavioural symptoms of community living older adults with dementia living in Asia, and impact on their informal carers: A systematic review and meta-analysis. Hong Kong Physiotherapy Journal, 43(1), 3–17. https://doi.org/10.1142/S101370252350004X

36.

Schröder-Butterfill

Fithry

T. S.

(2014). Care dependence in old age: Preferences, practices and implications in two Indonesian communities. Ageing and Society, 34(3), 361–387. https://doi.org/10.1017/S0144686X12001006

37.

Shenton

(2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22(2), 63–75. https://doi.org/10.3233/efi-2004-22201

38.

Suttanon

Hill

K. D.

Said

C. M.

Williams

S. B.

Byrne

K. N.

Logiudice

Lautenschlager

N. T.

Dodd

K. J.

(2013). Feasibility, safety and preliminary evidence of the effectiveness of a home-based exercise programme for older people with Alzheimer’s disease: A pilot randomized controlled trial. Clinical Rehabilitation, 27(5), 427–438. https://doi.org/10.1177/0269215512460877

39.

Taylor

N. F.

Dodd

K. J.

McBurney

Graham

H. K.

(2004). Factors influencing adherence to a home-based strength-training programme for young people with cerebral palsy. Physiotherapy, 90(2), 57–63. https://doi.org/10.1016/j.physio.2003.09.001

40.

Taylor

M. E.

J. C. T.

Lord

S. R.

Kurrle

S. E.

Webster

Savage

Delbaere

(2020). Pilot feasibility study of a home-based fall prevention exercise program (StandingTall) delivered through a tablet computer (iPad) in older people with dementia. Australasian Journal on Ageing, 39(3), e278–e287. https://doi.org/10.1111/ajag.12717

41.

United Nations . (2015). World population prospects: The 2015 revision, key findings and advance tables. United Nations.

42.

Wang

Zhou

Fang

(2022). Care burden on family caregivers of patients with dementia and affecting factors in China: A systematic review. Frontiers in Psychiatry, 13, Article 1004552. https://doi.org/10.3389/fpsyt.2022.1004552

43.

Watts

Walters

R. W.

Hoffman

Templin

(2016). Intra-individual variability of physical activity in older adults with and without mild Alzheimer’s disease. (Report). PLoS One, 11(4), Article e0153898. https://doi.org/10.1371/journal.pone.0153898

44.

Weiss

E. F.

Malik

Santos

Ceide

Cohen

Verghese

Zwerling

J. L.

(2020). Telehealth for the cognitively impaired older adult and their caregivers: Lessons from a coordinated approach. Neurodegenerative Disease Management, 11(1), 83–89. https://doi.org/10.2217/nmt-2020-0041

45.

World Bank Publications . (2016). Live long and prosper: Aging in East Asia and pacific. World Bank Publications

46.

World Health Organization . (2021). Global status report on the public health response to dementia. World Health Organization. Retrieved 11 April 2022 from. https://www.who.int/publications/i/item/9789240033245

47.

World Health Organization . (2023). Dementia fact sheet. Retrieved 27 June from. https://www.who.int/news-room/fact-sheets/detail/dementia

48.

Xiao

L. D.

Wang

G.-P.

De Bellis

Verbeeck

Kyriazopoulos

(2014). Family caregiver challenges in dementia care in Australia and China: A critical perspective. BMC Geriatrics, 14(1), 6. https://doi.org/10.1186/1471-2318-14-6

Experiences of Indonesian people with dementia and carers undertaking an online-delivered exercise program

Abstract

Keywords

Introduction

Method

Study design

Sampling and recruitment

Data collection and interviews

Ethics approval

Data analysis

Findings

Theme 1: Motivating factors to participate

Importance of meaningful activity

Previous experience

Carer’s recommendation

Theme 2: Benefits for people with dementia

Physical health

Psychological health and wellbeing

Cognition and communication

Theme 3: Impacts on carers

Positive impacts

Negative impacts

Theme 4: Challenges and enablers to exercising

Challenges

Enablers

Theme 5: Carer’s strategies for exercise engagement

Theme 6: Roles, relationships and supports

Presence of carer

Support of physiotherapist

Support from other family/employer

Enhanced connections/relationships

Theme 7: Participants’ receptiveness to online delivery of exercise program

Opportunity to engage

Technology-related issues

Preference for face-to-face delivery

Improvement opportunities

Discussion

Strengths and limitations

Conclusion

Footnotes

Acknowledgements

Declaration of conflicting interest

Funding

Ethical statement

ORCID iDs

Data availability statement

Author Biographies

References