Preliminary Findings of an Active Multicomponent Lifestyle Intervention for People with Dementia and Their Carers: Mixed Methods Study

D’Cunha, Nathan M.; Bennett, Michelle; Mitterfellner, Rachael; Brennan, Rosalie; Wiseman, Lara; Isbel, Stephen; Bail, Kasia; Barrett, Louise; Rutherford, Kathleen; Huang, Ian; Gibson, Diane

doi:https://doi.org/10.1155/2023/5395080

Health & Social Care in the Community

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Abstract Introduction Methods Results Discussion Data Availability Conflicts of Interest Acknowledgments Supplementary Materials References Copyright Related Articles

Research Article | Open Access

Volume 2023 | Article ID 5395080 | https://doi.org/10.1155/2023/5395080

Preliminary Findings of an Active Multicomponent Lifestyle Intervention for People with Dementia and Their Carers: Mixed Methods Study

Nathan M. D’Cunha,^1,2Michelle Bennett,^1,3Rachael Mitterfellner,^1,3Rosalie Brennan,³Lara Wiseman,^1,2Stephen Isbel,^1,2Kasia Bail,^2,4Louise Barrett,³Kathleen Rutherford,³Ian Huang,¹and Diane Gibson²

Academic Editor: Gianpiero Greco

Received18 Feb 2023

Revised17 Apr 2023

Accepted01 Aug 2023

Published10 Aug 2023

Abstract

There is a need for integrated and effective postdiagnostic rehabilitation programs for community-dwelling people with dementia and their carers to promote their quality of life and management of dementia. Here, we report on preliminary findings of the Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) Program conducted in Canberra, Australia. Over twelve weeks, six people with dementia and their carers completed five hours of weekly small group activities and separate individual appointments. SPICE is an active therapeutic intervention with five components delivered by allied health professionals: (1) cognitive stimulation therapy; (2) carer education, support, and capacity building; (3) physical activity; (4) Care Of People with dementia in their Environments (COPE) program; and (5) dietary assessment and advice. Participants completed questionnaires pre- and post-intervention and a program evaluation interview which was analysed by qualitative thematic analysis. The program demonstrated high program satisfaction ratings and program adherence (94% people with dementia and 92% carers) which supports intervention feasibility. The results of quantitative outcome measures suggest positive effects, but inferences cannot be drawn due to small sample size. Qualitative themes from participant experiences highlighted the following: (1) social connection, engagement, and interaction were key drivers of the success of the program; (2) clinicians fostered a positive and respectful culture; (3) carers were supported with strategies and skills to reframe dementia; and (4) reablement can be fun. The new combination of evidence-based interventions was feasible and considered valuable. Further results are required to confirm these findings and support a longer-term trial.

1. Introduction

There is a need for multidisciplinary approaches to postdiagnostic care following a dementia diagnosis in Australia [1] and worldwide [2]. The period following a dementia diagnosis provides a critical opportunity for healthcare providers to facilitate appropriate treatment, care, and access to services [3]. Currently, pharmacotherapy and information are the primary support following a dementia diagnosis [2], while navigating care pathways and accessing treatment is often constrained by systemic and attitudinal barriers, including stigma [4].

There is an absence of a consistent pathway to equip people with dementia with tools to plan for the future, stay active in the community, and maintain quality of life, independence, and preferred daily activities [1, 5–8]. Access to existing postdiagnostic interventions typically relies on individuals independently identifying and seeking out services [6]. Carers report a preference for tailored information, and a common concern is that they often do not know what they are looking for when accessing dementia-specific services [3]. For people with dementia living in the community, information about services can sometimes be provided in an ad hoc manner during incidental hospital visits and by primary care physicians or nongovernmental organisations [1, 3, 5]. These service recommendations are often inconsistent and lack integration, resulting in barriers to accessing timely intervention and use only when at crisis point [9].

There is evidence supporting rehabilitation and reablement interventions delivered by allied health professionals including cognitive-oriented treatments, physical activity, and occupational therapy [10–14]. Interventions traditionally focussed on delaying or slowing the rate of cognitive decline. Yet, enhancing quality of life through interventions which provide opportunities for cognitive stimulation, working on communication skills, and those supporting functional independence and reducing risk of falls are now more common [10, 14–21], but often limited to research settings [8]. Benefits may be observed through interventions which specifically target carers. Carer-focussed psychoeducational interventions can reduce their stress, anxiety, and depression and improve self-efficacy and quality of life [11, 19, 22]. Carer interventions may improve the quality of life and neuropsychiatric symptoms of the person with dementia [22] by reducing risks arising from inadequate knowledge of caring [1, 5]. Despite these benefits, access to clinicians for intervention can be challenging for people with dementia and their carers [14]. Individual clinicians may find it difficult to address the range of support informal carers seek, and multidisciplinary appointments are not readily available. A further challenge is introduced when carers do not have access to appointments beyond those conducted with the person with dementia [1].

Due to the complex and often unpredictable nature of dementia, single-domain interventions may be insufficient when addressing multifaceted issues and the totality of needs [1, 5]. Multicomponent interventions are associated with a lower prevalence of requiring long-term institutional care for people with dementia when compared to single-component interventions [23]. For carers, multicomponent interventions can improve knowledge, attitudes, and self-efficacy [21]; enhance quality of life and well-being and reduce carer burden and depressive symptoms [24]. Multicomponent interventions may also be more economical than single-component interventions [23–25].

Considering the challenges in accessing and receiving appropriate and timely postdiagnostic dementia care, more evidence is needed to determine if intensive multicomponent interventions for people with dementia are effective. The present study examines the feasibility, acceptability, and effectiveness of a new multicomponent, postdiagnostic rehabilitation intervention delivered by a multidisciplinary allied health team aiming to promote the quality of life of people with dementia and their carers.

2. Methods

2.1. Design

In this article, we report on preliminary findings from the first group of the Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) Program. A clustered, waiting-list design pilot study is being conducted, with data collection scheduled to be completed in early 2024. This study will recruit at least 24 dyads across two intervention groups and two waiting-list groups. Here, we report on the first six dyads to complete the program and their feedback, focusing on feasibility, acceptability, and preliminary results on effectiveness. The study is registered on the Australia New Zealand Clinical Trials Registry (ACTRN12622001522707) and received ethical approval from ACT Health (2022.ETH.00012).

2.2. Participants

Six dyads (six people with dementia and their six carers) were recruited in a convenience sample through referral or self-selection. People with dementia were eligible to participate if they met the following criteria:(i)Have a dementia diagnosis made by a health professional(ii)Have a Clinical Dementia Rating score of between 0.5 and 2 [26](iii)Willing to participate in the program for greater than 10 of the 12 weeks (e.g., no planned absences)(iv)Have a primary carer (spouse, immediate family member, or paid carer) aged 18 years or over, willing and able to participate in the carer-required program components(v)Can converse in English(vi)Resident of the ACT

In the pilot study, there are no restrictions for enrolment based on time since diagnosis. Participants met with a researcher to read the participant information sheet and ask questions, and all provided written informed consent.

2.3. Intervention

The SPICE Program is based at the Brindabella Day and Ambulatory Rehabilitation Centre at the University of Canberra Hospital. The program was initiated by Canberra Health Services, designed in consultation with the University of Canberra and refined with Dementia Australia Advocates and staff. The SPICE Program aims to delay the progression of dementia and improve quality of life through an active therapeutic rehabilitation program, which includes education and skill development for carers. The twelve-week SPICE Program consists of five components: (1) cognitive stimulation therapy (CST)[15]; (2) carer social, emotional, and resilience education and capacity building (Supplementary Table 1) [27, 28]; (3) physical activity; (4) Care of People with dementia in their Environments (COPE) Program [12]; and (5) dietary assessment and advice. Components one to three were completed weekly at the hospital, across 2.5 hours on both Wednesday and Friday. The physical activity program was optional for carers, however, all decided to participate. More detail is provided in Table 1.

2.4. Data Collection

Data collection occurred pre- and postintervention. The baseline assessment includes selected questions from the interRAI Home Care Instrument for sociodemographic information, falls, and hospitalisations [29]. A suite of quality of life instruments were used: Dementia Quality of Life (DEMQOL) [30], DEMQOL-Proxy (completed by the carer), and Carer Quality of Life (C-DEMQOL) [31]. Cognitive function of people with dementia was assessed using Addenbrooke’s Cognitive Examination (ACE-III). The ACE-III is a global cognitive screening measure to examine attention, orientation, memory, language, visual perception, and visuospatial skills [32]. The neuropsychiatric inventory was used with carers to assess the neuropsychiatric symptoms of the people with dementia [33]. The 12-item World Health Organisation Disability Assessment Schedule 2.0 (WHODAS 2.0) assessed disability and daily functioning [34].

A battery of physical function measures were administered: timed up and go (TUG) assessed functional mobility; the 10 metre walk test as an assessment of walking speed over a 14 metre track, measuring the middle 10 metres; the alternating step test as a measure of dynamic balance; and the 30 second sit-to-stand test to evaluate the participant’s lower limb strength, speed, and coordination. Hand grip strength was also tested as an indicator of general physical status.

Finally, all participants completed a program satisfaction interview at the completion of the intervention. This survey consisted of twelve questions using 5-item Likert scales to measure participant’s enjoyment, perceived usefulness, benefits, acceptability of the schedule and time burden, and ratings of each component of the program. Open-ended questions were also asked on whether the program changed anything for the participants, suggestions to improve the program and what was not useful, and whether they would recommend the program to others and why.

2.5. Data Analysis

Quantitative data were summarised by descriptive statistics (mean, standard deviation, range, and effect size). As we are reporting preliminary findings, inferential statistics were not used. Qualitative data from the program satisfaction interview were transcribed verbatim and independently analysed by two authors (N.M.D and L.W). The analysis used the six-phase process for data engagement, coding, and theme development described by Braun and Clarke (2020), undertaking data familiarisation, systematic data coding, generation of initial themes from coded data, developing and reviewing themes, refining, defining and naming themes, and writing [35, 36]. Two additional authors (I.H and D.G) refined and confirmed themes by discussion.

3. Results

Participant and carer characteristics are presented in Table 2. The group comprised four males and two females; five of whom were diagnosed with Alzheimer’s disease and one with a combination of Alzheimer’s disease and vascular dementia. The mean age for people with dementia was 77.7 (±6.80) years. There were four female and two male carers; four were spouses, one daughter and one carer. Average age of the carers was 63.7 (±15.2).

Indications of program feasibility and acceptability are evident in the data on attendance and from the program satisfaction interview. Attendance to the hospital-based components of the program was 94% for people with dementia and 92% for carers. On four occasions, a dyad left early (and therefore missed the exercise group) due to another appointment. All participants completed the COPE program in their homes over ten appointments, except for one dyad who achieved their outcomes in nine. All three dietary assessment and advice appointments were attended, with the exception of one dyad who completed only two of three dietary appointments. The program satisfaction questionnaire revealed scores greater than four out of five on a Likert scale for all participants for enjoyment of the program, perceived benefits, and usefulness. All participants agreed that they would like it to continue. No participants indicated the program was a burden relating to the time commitment required. All program components were individually considered useful by all participants. Results of Likert-style questions are presented in Supplementary Table 2.

Indications of program effectiveness are derived from the pre- and postpsychosocial outcome measures (Table 3) and physical function outcome measures (Table 4). These data suggest the SPICE Program may improve quality of life and well-being among people with dementia and their carers, with the means of all psychosocial and all but one of the physical outcome measures (hand grip strength in carers) showing positive change.

3.1. Qualitative Analysis of Program Satisfaction Interview

The vast majority of participant feedback was positive, highlighting the program as engaging, enjoyable, inclusive, and supportive. Four overall themes are described below, with selected quotes presented in Table 5. Responses are coded by dyad (1–6) and person with dementia (P) and carer (C).

3.1.1. Theme 1: Social Connection, Engagement, and Interaction Were Key Drivers of the Success of the Program

The majority of participants valued the social aspect of the program. People with dementia said SPICE was easy to be part of and they enjoyed the opportunity for an outing. People with dementia enjoyed listening and speaking with each other in the CST program (1P, 2P, and 5P). Carers recognised CST as an opportunity for reminiscence, connection, and laughter. People with dementia gained confidence by working on their communication skills and feeling what they had to say what was valuable and people were listening, with several carers reporting the person with dementia becoming more socially engaged outside of the program as well as inside it (1C, 4C, 5C, and 6C). All components were perceived to have worked together synergistically and contributed to enhancing social connection (2C and 5C). Carers suggested the program’s intensity enabled the formation of bonds and a social support system that was not experienced in previous dementia-specific groups they had been part of (1C, 2C, and 3C). This connection was further demonstrated by carers initiating interaction outside the program via a WhatsApp group, finding value in using the chat application to share experiences and advice (1C, 3C, 4C, and 5C). Carers said future activities are planned together, and they hope bonds formed by the people with dementia will continue (1C and 2C).

3.1.2. Theme 2: Clinicians Fostered a Positive and Respectful Culture

Clinicians delivering the SPICE Program were described as treating the people with dementia with dignity and respect within an inclusive environment (2C and 5C), welcoming, accepting, and caring for people as adults rather than patients (1C, 2C, and 5C). The person-centred focus was appreciated in participant feedback, as the components for people with dementia catered to the needs of the individual using a strength-based approach (1P, 1C, and 2C). Carers noted that the program’s components facilitated success through fostering a physically and socially safe environment. For example, the exercise program was designed to be easy to follow for people with dementia, with assistance from their carer (1C and 5C), and CST was delivered in a judgement-free environment (5C). Carers noted a program strength to be its inclusiveness and the unique way people with dementia and carers were able to interact and get to know each other due to the small group size and friendly environment fostered by clinicians (2C and 5C). Carers reported that clinicians genuinely cared and were invested (2C and 5C), evident by adapting to their individual needs and providing advice and resources beyond expectations (3C and 5C).

3.1.3. Theme 3: Carers Were Supported with Strategies and Skills to Reframe Dementia

Carers received a wide array of benefits from the education and support received during the program. The individualised strategies developed during the carer components and COPE were highly valued (5C). Carers noted gaining skills to increase participation in meaningful activities with the person with dementia (1C and 4C), a greater ability to problem-solve issues, and strategies to manage behavioural and communication difficulties (4C and 5C). Carers also received psychological benefits from the program. Several noted that their attitude towards the person they care for had changed (1C and 5C) as they applied knowledge attained through the program to better manage their emotions through patience and acceptance, remaining in the present, exercising self-compassion, and not blaming the person with dementia or themselves (1C, 2C, 4C, 5C, and 6C). Where some of the carers did have previous experience receiving dementia education, the reminders about previous knowledge were beneficial (1C and 3C). Carers were also inspired to apply what they learned during the program to make changes outside the program curriculum (1C, 3C, and 4C), for example, seeking out new opportunities for social engagement, including mentally and physically stimulating activities for dyads to do together such as line dancing, singing (choir), playing pool, and purchasing a treadmill for use at home.

3.1.4. Theme 4: Reablement Can Be Fun

People with dementia reported that the SPICE Program was fun, particularly the CST and physical activity components. People with dementia commented on how much they talked and laughed during the CST activities, and conversation often continued into the afternoon tea break, where they would discuss the daily CST activity with carers and each other (2P, 5P, and 5C). The physical activity sessions were viewed as a social activity as well as a physical one, incorporating activities which the group enjoyed doing together such as balloon volleyball (3P, 4P, 5C, and 6C). During week two, clinicians asked group members about their music preferences and developed personally tailored playlists for future sessions, which enhanced both enjoyment and motivation to exercise (3C and 5C). CST and the physical activity program were viewed as simple to do and mentally stimulating (3P, 6P, and 5C), and over time, built the confidence of the people with dementia (1P, 1C, and 3C). When a person with dementia was reluctant to attend on a few days, a strategy employed by carers was to remind them that they previously enjoyed attending (2C and 6C). One carer used this strategy to encourage the person with dementia to go to other activities outside of SPICE (5C).

3.2. Challenges and Suggestions for Improvement

The primary challenge expressed by carers was a lack of time to implement some of the education and strategies from the carer program, COPE sessions, and dietary assessment and advice (1C and 2C). While this led to a sense of guilt for some carers, it was also viewed as an opportunity for program benefits to extend past the twelve weeks as they would have more time to revisit strategies and learnings (1C, 2C, and 4C). When reflecting on the COPE Program, one carer said “I don’t think that you can expect the person with dementia to actually take on board much of what’s said, but it may be useful information and useful strategies for the person who cares for them” (2C). One person with dementia expressed disappointment in not knowing what the components were leading towards in the future, feeling a sense of loss when it ended, and wanting to know the next steps (3P). The same participant would have liked to get more information about dementia during the program (3P). One carer reported feeling confused by a summary of the complex Australian aged care system funding models and wanted more detail on Dementia Australia services (5C). Two carers said they would have appreciated the opportunity for individual appointments with a social worker to discuss more sensitive issues (1C and 3C). While there was a general perception that carers could be open in sharing their experiences with each other, some issues were still considered too sensitive (3C). Another suggestion was for options to continue to gather and have access to other community-based programs where the group could continue to meet (2C and 3C).

4. Discussion

These preliminary findings of the SPICE Program demonstrate that an intensive, multicomponent intervention is both feasible and valuable for people with dementia and their carers. High program satisfaction ratings and positive feedback from all participants were supported by positive results from the psychosocial and physical outcome measures. The qualitative analysis revealed that all participants had a high appreciation for the social aspects of the program and the bond the group was able to form over the twelve weeks. Despite the considerable time commitment, adherence to all components was high. The five hours spent together each week enabled group members to develop a sense of familiarity and friendship with one another. High attendance rates appear to be influenced by the group members’ enjoyment of the program, the relationships formed, and the inclusive environment fostered by clinicians. While social engagement and interaction were a feature of the program for all participants, carers also indicated that the strategies and lessons learned during COPE and the carer program empowered them as carers. This finding aligns with the success of previous results supporting COPE delivery [12, 37], as well as other occupational therapy-based programs [11, 38].

The overall success of the first implementation of the SPICE program can be attributed to several factors supported by participant feedback. The program design successfully incorporated group and dyadic components into an intense but manageable twelve-week active therapeutic intervention. The five hours spent together each week enabled group members to form friendships which strengthened over time. Currently, there is not conclusive evidence that group interventions have significant advantages over individual interventions [24]. However, in a randomised controlled trial, individual CST did not demonstrate the same clinical benefits as group CST [39]. For carers, group interventions can facilitate the formation of support networks and expand their social resources with benefits such as greater well-being and resilience [28, 40]. A recent meta-analysis of 31 multicomponent interventions for carers found benefits to their well-being, and reductions in depression, anxiety, and carer burden [19]. However, only 21 included studies were conducted face-to-face, and the majority were held only once per week or fortnightly.

People with dementia reported the face-to-face components of the program to be useful. The majority of positive comments referred to the CST program as fun; allowing participants to express themselves in a safe and judgement-free environment. The physical activity group was also considered effective, regardless of whether a participant was already exercising outside of the program. CST and exercise have both been demonstrated to delay the progression of neuropsychiatric symptoms [18, 41]. However, one person with dementia expressed a sense of loss and confusion after the program, and other carers echoed similar sentiments. Carers started their own WhatsApp group to communicate throughout the program and so that they could continue meeting postprogram. While referrals, recommendations, and resources to stay engaged in activities were provided to participants during and at the end of the program, further consideration should be given to guide participants to continue maximising social connections and activity engagement postprogram.

Limitations include the small and heterogeneous sample (age and time since diagnosis). As such, inferential statistics were not possible. Another Australian pilot study recruited participants within eight months of diagnosis and found some participants were reluctant to receive support [4]. In our sample, participants may have been more accepting of their diagnosis at their current stage of dementia. The quantitative outcome measures suggest a favourable impact of the program over the twelve weeks, and quality of life in self-report and proxy measures improved for the people with dementia. However, the quantitative outcome measures selected did not specifically evaluate the social engagement and interaction described in the program evaluation interviews. Two clinicians involved in program delivery completed some outcome measures with participants, and familiarity may have affected their responses. A future trial should aim to use naïve or blinded assessors.

Following completion of the first group and consideration of feedback from participants, some minor modifications were made for the ongoing study and potential future iterations of the program. Referrals to a social worker will be offered for more sensitive issues not suitable for discussion in a group setting. Some carers did not have time to implement all new strategies and recommendations during the intensive twelve-week program. This may impact clinical delivery and have an added benefit of providing a toolkit of strategies for postprogram implementation by carers. While interest in participating in the SPICE Program has been high to account for potential attrition, seven dyads will be recruited to the two waiting-list groups.

In conclusion, the preliminary findings of the multicomponent SPICE Program demonstrated high acceptance, adherence, and enjoyment for people with dementia and their carers. The program’s intensity was feasible, and the components address many of the dementia care and lifestyle factors that were important to carers. Carers felt supported and were empowered with new strategies, improved understanding of dementia, and problem-solving for behavioural and communication issues. The pilot study, scheduled to finish data collection in early 2024, will help inform a future appropriately powered trial and potentially support ongoing program delivery to people with dementia and carers in the ACT region.

Data Availability

The quantitative data used to support the findings of this study are available from the corresponding author upon request.

Conflicts of Interest

The authors declare that they have no conflicts of interest.

Acknowledgments

The research team would like to thank the study participants. The authors would also like to thank Lilian Anderson, Rachel Bacon, Kate Bunyan, Lyn Brocklehurst, Charise Buckley, Angie Fearon, Julie Griffin, Sarah Jack, Jane Kellett, Sam Kosari, Alison Merrington, Emilia Roberts, and Elena Sutcliffe for their contributions to the project. The authors thank Charise Buckley, Sian Chadwick, Rebecca Scouller, and Cameron Stewart for advising the project design. This research was supported by Canberra Health Services, the Dementia Australia Research Foundation, Hazel Hawke Alzheimer’s Research, and the University of Canberra Faculty of Health. Open access publishing was facilitated by the University of Canberra, as part of Wiley—University of Canberra agreement via the Council of Australian University Librarians.

Supplementary Materials

Supplementary Table 1: social, emotional, and resilience education and capacity-building program. Supplementary Table 2: program satisfaction results for Likert scale questions. (Supplementary Materials)

References

M. Cations, G. Radisic, L. de la Perrelle et al., “Post-diagnostic allied health interventions for people with dementia in Australia: a spotlight on current practice,” BMC Research Notes, vol. 12, no. 1, p. 559, 2019.
View at: Publisher Site | Google Scholar
S. Gauthier, C. Webster, S. Servaes, J. A. Morais, and P. Rosa-Neto, World Alzheimer Report 2022: Life After Diagnosis: Navigating Treatment, Care and Support, Alzheimer's Disease International, London, UK, 2022.
A. Stephan, A. Bieber, L. Hopper et al., “Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries,” BMC Geriatrics, vol. 18, no. 1, p. 131, 2018.
View at: Publisher Site | Google Scholar
L. F. Low, A. Barcenilla-Wong, M. Fitzpatrick et al., “Dementia lifestyle coach pilot program,” Australasian Journal on Ageing, pp. 1–9, 2022.
View at: Publisher Site | Google Scholar
Nhmrc National Institute for Dementia Research Special Interest Group, “Rehabilitation and Dementia. We need a model of health and aged care services that adequately supports Australians with dementia,” Medical Journal of Australia, vol. 214, no. 2, pp. 66–68.e1, 2021.
View at: Publisher Site | Google Scholar
L.-F. Low, M. Gresham, and L. Phillipson, “Further development needed: models of post-diagnostic support for people with dementia,” Current Opinion in Psychiatry, vol. 36, no. 2, pp. 104–111, 2023.
View at: Publisher Site | Google Scholar
L.-F. Low, T. J. Duckworth, L. King et al., “Care planning for community-dwelling people with dementia: a systematic scoping review,” Health and Social Care in the Community, vol. 2023, Article ID 4674120, 23 pages, 2023.
View at: Publisher Site | Google Scholar
C. M. C. O'Connor, C. J. Poulos, S. Kurrle, and K. J. Anstey, “Bridging the gap: study protocol for development of an implementation strategy for evidence-informed reablement and rehabilitation for community-dwelling people with dementia,” Archives of Gerontology and Geriatrics, vol. 108, Article ID 104943, 2023.
View at: Publisher Site | Google Scholar
Z. Aldridge, A. Burns, and K. Harrison Dening, “ABC model: a tiered, integrated pathway approach to peri- and post-diagnostic support for families living with dementia (Innovative Practice),” Dementia, vol. 19, no. 8, pp. 2901–2910, 2019.
View at: Publisher Site | Google Scholar
A. Bahar-Fuchs, L. Mowszowski, N. T. Lautenschlager, and K. Cox, “Chapter 2- Cognitively oriented treatments in dementia,” in Dementia Rehabilitation, L. F. Low and K. Laver, Eds., pp. 15–34, Academic Press, Cambridge, MA, USA, 2021.
View at: Google Scholar
S. Bennett, K. Laver, S. Voigt-Radloff et al., “Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis,” BMJ Open, vol. 9, no. 11, Article ID e026308, 2019.
View at: Publisher Site | Google Scholar
L. Clemson, K. Laver, M. Rahja et al., “Implementing a reablement intervention, “care of people with dementia in their environments (COPE)”: a hybrid implementation-effectiveness study,” The Gerontologist, vol. 61, no. 6, pp. 965–976, 2021.
View at: Publisher Site | Google Scholar
X.-P. Zhou, L.-M. Zhang, G.-Q. Chen et al., “Meta analysis of aerobic exercise improving intelligence and cognitive function in patients with Alzheimer’s disease,” Medicine, vol. 101, no. 42, p. e31177, 2022.
View at: Publisher Site | Google Scholar
Y.-H. Jeon, L. Krein, C. M. C. O’Connor et al., “A systematic review of quality dementia clinical guidelines for the development of WHO’s package of interventions for rehabilitation,” The Gerontologist, p. gnac105, 2022.
View at: Publisher Site | Google Scholar
B. Woods, E. Aguirre, A. E. Spector, and M. Orrell, “Cognitive stimulation to improve cognitive functioning in people with dementia,” Cochrane Database of Systematic Reviews, vol. 15, p. CD005562, 2012.
View at: Publisher Site | Google Scholar
N. M. D'Cunha, S. Isbel, A. J. McKune, J. Kellett, and N. Naumovski, “Activities outside of the care setting for people with dementia: a systematic review,” BMJ Open, vol. 10, no. 10, Article ID e040753, 2020.
View at: Publisher Site | Google Scholar
N. M. D'Cunha, A. J. McKune, S. Isbel, J. Kellett, E. N. Georgousopoulou, and N. Naumovski, “Psychophysiological responses in people living with dementia after an art gallery intervention: an exploratory study,” Journal of Alzheimer's Disease, vol. 72, no. 2, pp. 549–562, 2019.
View at: Publisher Site | Google Scholar
K. Kouloutbani, F. Venetsanou, A. Markati, K. E. Karteroliotis, and A. Politis, “The effectiveness of physical exercise interventions in the management of neuropsychiatric symptoms in dementia patients: a systematic review,” International Psychogeriatrics, vol. 34, no. 2, pp. 177–190, 2022.
View at: Publisher Site | Google Scholar
J. He, J. Wang, H. Zhong, and C. Guan, “The effectiveness of multi-component interventions on the positive and negative aspects of well-being among informal caregivers of people with dementia: a systematic review and meta-analysis,” International Journal of Environmental Research and Public Health, vol. 19, no. 12, p. 6973, 2022.
View at: Publisher Site | Google Scholar
P. Jogie, M. Rahja, M. Berg, M. Cations, S. Brown, and K. Laver, “Goal setting for people with mild cognitive impairment or dementia in rehabilitation: a scoping review,” Australian Occupational Therapy Journal, vol. 68, no. 6, pp. 563–592, 2021.
View at: Publisher Site | Google Scholar
L. Phillipson, K. Johnson, E. Fielding et al., “Rethinking respite in Australia: a naturalistic effect study of a multicomponent community program to promote respite knowledge, attitudes and behaviours of carers of people with dementia,” Health and Social Care in the Community, vol. 29, no. 5, pp. 1566–1583, 2021.
View at: Publisher Site | Google Scholar
V. Dubé, “Psychoeducational interventions: effective and relevant interventions to support carers,” in World Alzheimer Report 2022, S. Gauthier, C. Webster, S. Servaes, J. A. Morais, and P. Rosa-Neto, Eds., Alzheimer's Disease International, London, UK, 2022.
View at: Google Scholar
U. Eloniemi-Sulkava, M. Saarenheimo, M. L. Laakkonen et al., “Family care as collaboration: effectiveness of a multicomponent support program for elderly couples with dementia. Randomized controlled intervention study,” Journal of the American Geriatrics Society, vol. 57, no. 12, pp. 2200–2208, 2009.
View at: Publisher Site | Google Scholar
K. Laver, R. Milte, S. Dyer, and M. Crotty, “A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia,” Journal of Aging and Health, vol. 29, no. 8, pp. 1308–1349, 2017.
View at: Publisher Site | Google Scholar
E. G. Birkenhäger-Gillesse, W. P. Achterberg, S. I. M. Janus, S. U. Zuidema, and W. B. van den Hout, “Cost-effectiveness of dementia training for caregivers in caregiver-patient dyads: a randomized controlled study,” Alzheimer's and Dementia, vol. 8, no. 1, Article ID e12281, 2022.
View at: Publisher Site | Google Scholar
L. Berg, “Clinical dementia rating,” British Journal of Psychiatry, vol. 145, no. 3, p. 339, 2018.
View at: Publisher Site | Google Scholar
T. Pierse, F. Keogh, D. Challis, and E. O'Shea, “Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios,” Aging and Mental Health, vol. 26, no. 4, pp. 679–687, 2021.
View at: Publisher Site | Google Scholar
M. Parkinson, S. M. Carr, R. Rushmer, and C. Abley, “Investigating what works to support family carers of people with dementia: a rapid realist review,” Journal of Public Health, vol. 39, no. 4, pp. e290–e301, 2017.
View at: Publisher Site | Google Scholar
L. C. Gray, R. Bernabei, K. Berg et al., “Standardizing assessment of elderly people in acute care: the interRAI acute care instrument,” Journal of the American Geriatrics Society, vol. 56, no. 3, pp. 536–541, 2008.
View at: Publisher Site | Google Scholar
S. C. Smith, D. L. Lamping, S. Banerjee et al., “Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology,” Health Technology Assessment, vol. 9, no. 10, pp. 1–93, 2005.
View at: Publisher Site | Google Scholar
A. Brown, T. E. Page, S. Daley et al., “Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL,” Quality of Life Research, vol. 28, no. 8, pp. 2299–2310, 2019.
View at: Publisher Site | Google Scholar
J. R. Hodges and A. J. Larner, “Addenbrooke’s cognitive examinations: ACE, ACE-R, ACE-III, ACEapp, and M-ACE,” in Cognitive Screening Instruments: A Practical Approach, A. J. Larner, Ed., pp. 109–137, Springer International Publishing, New York, NY, USA, 2017.
View at: Google Scholar
J. L. Cummings, M. Mega, K. Gray, S. Rosenberg-Thompson, D. A. Carusi, and J. Gornbein, “The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia,” Neurology, vol. 44, no. 12, pp. 2308–2314, 1994.
View at: Publisher Site | Google Scholar
T. B. Üstün, N. Kostanjsek, S. Chatterji, and J. Rehm, Measuring Health and Disability: Manual for WHO Disability Assessment Schedule WHODAS 2.0, World Health Organization, Geneva, Switzerland, 2010.
V. Braun and V. Clarke, “One size fits all? What counts as quality practice in (reflexive) thematic analysis?” Qualitative Research in Psychology, vol. 18, no. 3, pp. 328–352, 2021.
View at: Publisher Site | Google Scholar
D. Byrne, “A worked example of Braun and Clarke’s approach to reflexive thematic analysis,” Quality and Quantity, vol. 56, no. 3, pp. 1391–1412, 2022.
View at: Publisher Site | Google Scholar
L. Clemson, K. Laver, Y.-H. Jeon et al., “Implementation of an evidence-based intervention to improve the wellbeing of people with dementia and their carers: study protocol for ‘Care of People with dementia in their Environments (COPE)’ in the Australian context,” BMC Geriatrics, vol. 18, no. 1, p. 108, 2018.
View at: Publisher Site | Google Scholar
S. Bennett, C. Travers, J. Liddle et al., “Barriers and enablers to the delivery and implementation of the tailored activity programme in Australia: perspectives of occupational therapists and their managers,” Australian Occupational Therapy Journal, vol. 70, no. 2, pp. 218–232, 2022.
View at: Publisher Site | Google Scholar
M. Orrell, L. Yates, P. Leung et al., “The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: a randomised controlled trial,” PLoS Medicine, vol. 14, no. 3, Article ID e1002269, 2017.
View at: Publisher Site | Google Scholar
L. Y. Chien, H. Chu, J. L. Guo et al., “Caregiver support groups in patients with dementia: a meta-analysis,” International Journal of Geriatric Psychiatry, vol. 26, no. 10, pp. 1089–1098, 2011.
View at: Publisher Site | Google Scholar
E. Carbone, S. Gardini, M. Pastore, F. Piras, M. Vincenzi, and E. Borella, “Cognitive stimulation therapy for older adults with mild-to-moderate dementia in Italy: effects on cognitive functioning, and on emotional and neuropsychiatric symptoms,” The Journals of Gerontology: Serie Bibliographique, vol. 76, no. 9, pp. 1700–1710, 2021.
View at: Publisher Site | Google Scholar

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Copyright © 2023 Nathan M. D’Cunha et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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