Empowered Care Partner Initiatives For Networks Of Peers And Persons Living With Dementia — Leela Koran, Laurie Walther, Tay Chia Yi & Sharifah Tahir

With the right support and platform, partnerships in care and support can extend beyond single-family units to networks of care partners and persons living with dementia.

The National Dementia Plan 2023-2030 is a wish list of some sort as we embark on a new political landscape this year. The critical role of care partners in the outcome for the person with dementia, and the impacts of dementia care partnering, underscore the need to prioritize the diverse needs of family care partners.

Ignoring them and their needs would have dire consequences, as documented in numerous studies nationally and globally. Some professionals and advocates even suggest that family care partners, mostly women and unpaid, especially those who provide full-time care, are indeed ‘invisible’. At times, the care partners are unaware of the health risks they face in the care partnering process. 

Thus, what can we as care partners do to take care of ourselves while we care for our loved ones? Equally important, how can we equip ourselves to draw on our invaluable collective lived experience and contribute towards supporting our peers as we move together towards realising our shared goals of the National Plan? 

Firstly, we need to empower ourselves. There are some levels of training offered by health professionals. However, many of us have relied on our resourcefulness to find the knowledge and skills that are most appropriate to support our loved ones.

A full-time care partner who practises Teepa Snow’s Positive Approach to Care© (PAC) since 2016 is convinced that the relational dynamics support her mother to live well with dementia. This motivated her to invest funds and time in PAC’s online certification courses. Today, as a PAC-certified independent advanced consultant and trainer, she combines this skills-set with her lived experience to support persons living with dementia and care partners through UniquelyMeInitiatives (UMI), a non-profit platform she founded this year.

The latest initiative under UMI was the five-module Eating Well with Dementia Education and Support Series. This is a promising effort for many reasons. UMI chose this topic because it is a common concern shared by care partners but rarely addressed by the support system despite it being a source of significant levels of stress and emotional triggers amongst care partners.

The content was created in close partnership between persons with lived experience and professionals (two speech-language therapists and a linguistics researcher) who value and were eager to be guided by lived experience to ensure that the Series met the needs of the participants.

The paradigm must, and is slowly shifting from rhetoric to empowering care partners and persons living with dementia. When the empowered care partners and persons living with dementia can support others, a critical support network is established. This in itself is empowering! 

So, how do we create this empowering and supportive environment? First, we have to understand dementia from the perspective of persons who live the experience on a daily basis, and respect their unique situations and resilience to determine their own solutions.

It is important to acknowledge that their continuous learning and adaptations through trial and error to meet the ever-changing needs of their loved ones, and their own, make them experts in their own right.

By design, the series embraced empowerment. It focused on an environment of sharing by the experts by experience through which everyone gained an array of perspectives, skills and knowledge for a shared understanding and outcomes.

The professionals supported the experts by experience by intertwining their technical knowledge while respecting the latter’s realities, resourcefulness, and capabilities. Deviating from the typical lecture-style format, this approach promoted trust and a safe space for sharing and learning.

Although the theme was on the fundamental needs for survival — nutrition and hydration — the safe space encouraged sharing of related topics and concerns as well as the attached emotions and personalised solutions.

Discussions included examples of the good and bad of existing services, the gaps, and their rights and tips to access services. Overall, the wholesome interactions highlighted the indivisible needs and rights of persons living with dementia and care partners.

Care partners and persons living with dementia cannot simply “be patient” in this journey without the necessary knowledge, skills and support. As dementia progresses, this support and assumed capacity would continue to build resilience for both parties.

In addition, they must be empowered to sustain their capabilities to make decisions for themselves and to exercise their rights to meaningfully engage in policy and decision-making. This is dignity in action.

Failure to achieve this will allow the continuation of others claiming to speak on their behalf, which is disempowering, alienating and could lead to exploitation that could further fuel the pervasive dementia-related stigma.

Over time, people with lived experiences build the toolbox necessary for understanding and responding to changes that come with this progressive condition. With the right support and platform, partnerships in care and support can extend beyond single-family units to networks of care partners and persons living with dementia who can understand and support each other towards growing in knowledge and skills, and living well with dementia.  

The series is a testament to this. It could be a promising model to be tested with different demographics and geographic coverage. The National Dementia Plan could be enriched in this manner.

Sharing the lessons learned and exploring possibilities with the Ministry of Health and other stakeholders would be a big step in the right direction. Persons living with dementia in Malaysia and their care partners are eager to commit to achieving the mutually beneficial goal as the Health Ministry is finalising the much-awaited National Dementia Plan.

Leela Koran is a linguistics researcher and content developer at Demtalk, Laurie Walther is a speech-language pathologist and Teepa Snow Positive Approach to Care© certified independent trainer, Tay Chia Yi is a speech language therapist and Vice-President of the Malaysian Association of Speech and Hearing (MASH), and Sharifah Tahir is a care partner and advocate, Teepa Snow Positive Approach to Care© certified independent advanced consultant and trainer, and the founder of UniquelyMeInitiatives.

  • This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.

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