World Alzheimer Report 2019 - Supporting Kaumātua with Dementia

This is an extract from the World Alzheimer Report 2019. Click here to read more essays and case studies in the full report, which analyses the findings of the world’s largest survey to date on attitudes to dementia.

Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia
Rangimahora Reddy & Pare Meha Rauawaawa, Kaumātua Charitable Trust, Etuini Ma’u, Waikato District Health Board, John Oetzel, University of Waikato

When asked to contribute to the World Alzheimer Report, we set out to identify the challenges of stigma, awareness raising, and diagnosis for Māori along with a unique cultural programme to address these challenges at a kaumātua (elder) serving organisation in Aotearoa (New Zealand). 

With a vision of “Hei manaaki ngā Kaumātua” – “To enhance the quality of life and wellbeing of Kaumātua” – Rauawaawa Kaumātua Charitable Trust was established in 1997 by a group of Kaumātua (elders) concerned about  loneliness and other key challenges facing Kaumātua. Based in Hamilton, New Zealand, Rauawaawa is an organisation firmly rooted in Kaupapa Māori principles (a philosophy of Māori for Māori). Central to these principles is the concept of mana (status, prestige), promoting practices that protect and uphold the dignity of Kaumātua, supporting their independence, and ensuring Kaumātua voices resonate through what we do, how we do it and when and where it is best done.

Rauawaawa is based out of Te Puna o Te Ora, a facility set up in 1941 as a residential facility for Māori moving from the rural areas into the city for work. It offers a rich history in its service to Māori and is unique in serving those that are the same age or younger. Many Kaumātua that engage with Rauawaawa today fondly recall the role the facility played in their earlier lives.

As in Maoridom, Kaumātua at Rauawaawa are revered for the mātauranga (knowledge/wisdom) gained from their lived experiences and for the central role they play in their whānau (extended family) and wider iwi (tribe). Many are also known for their experience as practitioners and custodians of tikanga (cultural customs). Kaumātua are often the first point of call in whānau crises; the cultural equivalent to the health emergency number. They are also greatly relied on by organisations to provide tikanga for events (e.g., opening a new building) and cultural training. In short, the reliance on Kaumātua has grown significantly over time.

But what happens when Kaumātua who have been the rangatira (leader) in the whānau end up needing manaaki (caring) themselves because of mate wareware (dementia)? Holding mana as a result of their rangatira role in a whānau can make it extremely challenging for both themselves and their whānau to acknowledge the symptoms, become informed, seek out a proper diagnosis, and access the support they need to enhance the quality of life and wellbeing of their Kaumātua. In a nutshell, the stigma of mate wareware may be enough for Kaumātua to resist sharing what they experience in the early stages, to disagree to having a proper assessment and to decline the opportunity to learn about the illness.

The stigma may also be enough for whānau members to try and hide what is happening with their beloved Kaumātua in an attempt to protect the mana of their Kaumātua and ensure they are not categorised or treated in a way that is not befitting of them, their whānau or their past. Other efforts to protect a kaumātua’s mana may include wrapping them in “cotton wool” or surreptitiously curtailing their independence by assuming more of the decision making for them. Another challenge with this stigma is it can induce assumptions of independence no longer being possible for the Kaumātua concerned; e.g., a vehicle, bicycle or scooter maybe confiscated by whānau as they try to protect their Kaumātua and others from physical harm and yet it still may be possible for the Kaumātua to have independence.

The realities of caring for Kaumātua with mate wareware are as diverse as they are challenging, as a balance is sought between promoting independence whilst maintaining safety. Rauawaawa as a provider of culturally focussed day programmes have been tested a number of times with providing adequate care for those with mate wareware. The outcomes have not always been up to our own expectations. The realisation that, as an organisation, you are no longer able to provide the level of oversight needed for a Kaumātua can bring on a rapid and horrendous sense of panic for their safety when they go missing. The possibilities of harm that run through your mind are endless as is the hole in your stomach from worry and the ache in your heart from failing to be the safe pair of hands that Kaumātua need you to be and that Whānau rightly expect you to be.

These experiences made us realise at Rauawaawa that safely integrating Kaumātua with mate wareware into our usual programmes, whilst still maintaining their mana, would be difficult for those with a more advanced mate wareware and that a more robust programme focussed solely on kaumātua with mate wareware was needed. In 2018, Rauawaawa were supported by Alzheimers New Zealand (NZ) to develop and implement a culturally responsive programme to promote understanding of mate wareware and the services available to support both the individual and whānau. The programme is called Hiki te Wairua (Lift the Spirit) and includes four key components:

  • A weekly group-based programme incorporating opportunities to engage and participate in activities such as te reo (Māori language), waiata (Māori songs), poi (Māori action songs) and rakau (Māori stick games).
  • Individualized visits that incorporate opportunities to educate and share information on mate wareware with whānau and Kaumātua, as well as provide information on the services available for them to access for support.
  • The incorporation of mate wareware service providers in quarterly health expos to promote awareness, and include opportunities for providers and potential clients to develop relationships.
  • To profile mate wareware in our annual Kaumātua Olympics which hosts Kaumātua service providers and their Kaumātua from across the North Island of NZ. This programme will be launched in Alzheimers month with Alzheimer’s NZ at Rauawaawa.

Kaumātua are a cultural taonga (treasure). Symptoms that change them from what they have been in the past to who they are with mate wareware are challenging. Their significant contribution to the wellbeing of a whānau, iwi and community is a small reminder of why they deserve the best of care available to ensure “Hei manaaki ngā Kaumātua.”