The early findings from the evaluation of our new day respite program show it promotes dignity, respect, choice and participation for people with dementia and provides their carers the support they need to continue the things they enjoy and keep their loved one at home.
At 3Bridges, we aim to make an impact with compassion and integrity for clients, staff, volunteers and our community through our services, which include respite aged care programs.
We began operating the Mindful Dementia Care program at our Ashfield site in Sydney’s inner-west in October 2023. The free program runs five days a week from 9.30am to 3.00pm. It involves a range of activities planned with clients and carers with a mix of physical, social, artistic, cognitive and therapeutic sessions.
We’re funding it through a grant from the Commonwealth’s Improving respite care for people with dementia and their carers program, which aims to extend people’s capacity to remain at home for longer through a better experience of the disease change process and improved self-image. It also aims increase carers’ sense of competence and quality of life.
Our MDC activities are designed to support these adaptation areas and enhance socialisation, affect, self-esteem and self-image, physical and mental health, enjoyment, and being useful. We have also adopted elements to respond to challenges carers face locally such as navigating two systems – My Aged Care and the Carer Gateway – and a lack of funded support services like respite care and post-diagnosis support pathways.
Currently the program has 17 dyads (person with dementia and carers) . Of these 10 are from culturally and linguistically diverse backgrounds, two-thirds of attendees are male and 11 out of the 17 participants have a spouse or partner as the main carer.
As part of the evaluation, we are monitoring the quality of the program and its immediate impact on participants and carers via three tools. They focus on immediacy indicators of wellbeing related to the psychosocial and physical environment of the program and emphasise the voices of participants in accordance with person-centred care principles and the concept of dementia care as supporting personhood.
Outcomes for older people with dementia
For program participants, we’re using the Greater Cincinnati Chapter Well-Being Observation Tool to rate wellbeing during the sessions through seven domains: interest, sustained attention, pleasure, negative affect, sadness, self-esteem, and normalcy.
Based on the data from 17 pairs over three months with an average attendance of three days a week, we found high scores in the domains of pleasure, sustained social normalcy and interest, and low scores in negative affect and sadness. The table below shows the mean scores for each domain.
The findings suggest the MDC program is effective in supporting key adaptation areas, such as preserving an emotional balance and positive self-image, and developing and maintaining social relationships.
What this means to overall quality of life remains to be tested and forms part of the future evaluation of the program.
In addition to ascertaining the overall impact of the MDC program on all participants, we’ll also analyse individual scores to explore the impact of personal attributes and dementia-specific factors on how they respond to and engage in the program activities.
Dutch research on the impact of group activities and their content on participants with dementia found the type of activity, rather than personal characteristics, more indicative of participation and interests.
An analysis of activity participation in the MDC program supports this finding by showing that variations on participants’ response and engagement were related to their interest in the activities being offered. For instance, activities such as life story, yoga and speech enhancement had low participation suggesting strong relationships between the type of activity and ratings of engagement among the participants.
Casual conversations and exercises have the highest participant engagement, and there was a relationship between an activity’s participation and high scores in wellbeing domains including interest, pleasure, mood and sustained attention. This finding highlights the importance of understanding how stimulus attributes, such as the content of a specific group activity, may differentially impact engagement and overall affect levels of individual participation, which can in turn influence program outcomes.
Carer feedback
To understand carers’ perceptions, we’re using the Carers Feedback Tool to rate client wellbeing after the sessions through six domains: interest, mood, normalcy, pleasure, and overall sense of satisfaction.
We are also collecting client feedback through informal interviews and conversations at the end of each day. Based on a paper-based survey of 17 carers three months after enrolment, most carers agreed their loved one:
- looks forward to attending the program
- feels happier or more content overall
- feels more connected to others.
This is encouraging feedback that supports findings from the Wellbeing Observation Tool pointing to impacts in the areas of emotional balance, positive self-image, and developing and maintaining social relationships. It is also important to note limited evidence of impact in the areas of showing more initiative and decision-making and interest in activities they used to do before.
The comments from carers below illustrate the perceived impacts the program is having on care recipient.
“(My husband) comes home after the program and wants to talk about it. He tells me everything he did (I guess everything he remembers). Compared to days when he was not attending the program, he would just sit at home quiet, sleep a lot and be quiet. He would be lethargic. On program days he wants to talk more, and he is more alert and more involved with people around him. He is also becoming more self-aware and uses strategies to manage his dementia. For example, before he used to answer questions with ‘I don’t know. I forgot’. But lately he says, ‘Give me some time and it will come’.”.
Carer’s comment in the Carer Feedback Form, December 2023
“He seems pleased that he is going to an ‘activity centre’ and I feel it has given him purpose. He looks alert and relaxed at the end of the session.”
Carer’s comment in the Carer Feedback from, February 2024.
Comments such as these highlight the unique ways in which the program impacts on older people with dementia, and how personal variations and experiences on the symptoms and stages of the disease may affect individual outcomes.
Wellbeing outcomes for carers
The Carers Feedback Tool also measures carer wellbeing through indicators including stress, social participation, time to do things, access to resources and relationships.
The feedback on the program’s impact in this area has been mixed. Some carers indicated significant improvements in areas such as social participation, coping skills, relationships, while others report limited personal gains.
The following table summarises their responses:
One noticeable finding is that all the carers agree the program allows them to continue providing care at home, reflecting a key objective of MDC. Comments from carers include:
“In the short time my husband has been in the program, the impact on my life as a carer is incommensurable. Not only in the time to do the things I enjoy, but the observation of the staff, how they engage with my husband and particularly how they manage his impulsive behaviours has been an insight and positive help to my management at home. For that I am most grateful.”
Carer’s comment in the Carer Feedback from, February 2024
“I am very happy with the program because I can see it is beneficial to my husband’s wellbeing because it gives him the mental and physical stimulation that he needs. It would help me more if the program would give me a longer respite (say from 10 to 5 pm). Thank you for all your attention and care.”
Carer’s comment in the Carer Feedback from, February 2024
Other carers have also mentioned longer respite hours through informal feedback to staff. It illustrates challenges in delivering the educational and therapeutic components for carers due to their greater motivation to use the program to take a break from caring.
Next steps
This preliminary analysis is an early attempt to understand and monitor the impact of the program on clients and their carers. While the small sample prohibits conclusive remarks on overall effectiveness, these early findings are encouraging and suggest the program is meeting specific indicators aligned with its objectives.
Further work is needed to understand how person-centred care translates into an enhanced sense of personhood for participants. Person-centred care requires that we recognise the personhood of people with dementia despite their difficulties in communicating their self-concept and identity.
Positively, the evidence so far that MDC activities promote dignity, respect, choice, and participation aligns with key elements of a personhood model.
We also need to further explore this program’s effectiveness in meeting the needs of culturally diverse participants as well as programs specifically designed to meet carers’ wellbeing and quality of life needs.
Dr Beatriz Cardona is a senior research fellow at 3Bridges and an adjunct fellow at Macquarie University
Amal Madani is general manager of aged care, disability and allied Health at 3Bridges
Email Beatriz.Cardona@3bridges.org.au for further information
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