Passing on hope to people living with dementia.
In a room of hundreds, many slowly raise their hands. Others nod in acknowledgement or look over to the neighbours in quiet affirmation. The question, “who knows someone living with dementia?” is something to which most of this room can relate.
It is no wonder. “There are currently over 70,000 people living with dementia in Aotearoa New Zealand,” says Dementia Wellington Chair, Anna Shires. “Chances are, you will either know someone or know of someone impacted by the condition.”
“Dementia is an umbrella term for a whole set of brain-related conditions which cause symptoms like memory loss and thinking changes,” says Dementia Wellington Clinical Lead/Educator, Sheena Farquhar.
The most common form of dementia, which translates to mate wareware in te Reo Māori (“the sickness of forgetting) is Alzheimer’s disease, which accounts for around two-thirds of all cases.
Although there are common symptoms, every person’s experience with dementia can be markedly different. “There is no common experience when it comes to dementia,” says Anna. “It truly is as unique as the person diagnosed with it. But no matter what that journey looks like, we are here to support at every step.”
Support to continue living fulfilling lives
For over 40 years, Dementia Wellington has been working with people with dementia and their whānau to support them through their journeys and help them to get the most out of their lives.
“Unfortunately, there is still a lot of negative stigma attached to a dementia diagnosis,” says Anna. “It is often associated with fear, but it can also come with hope, happiness and laughter. What we focus on is providing hope and support through the various stages.”
Including one-on-one advice, peer support, keeping active programmes, cognitive stimulation groups, support groups for carers and whānau, Dementia Wellington’s services provide education, learning and social connection opportunities.
“For people affected by or caring for people with dementia, it can be really lonely,” says Sheena. “We provide opportunities where they can connect with others, be real and spend time in spaces where they can just be.”
For Sue Piper, Dementia Wellington provided solace at an especially tough time. After her husband, Peter, was diagnosed, she joined a support group. “The impact of these groups cannot be underestimated,” says Sue. “Speaking with people who are going through similar things provides reassurance. It’s reassurance that you aren’t just imagining things, that it isn’t just you, that the things you’re experiencing are to be expected.”
“Having someone who understands the ups and downs, can speak candidly and is not afraid to say, ‘this is tough!’ can be really validating,” says Sheena.
An important aspect of Dementia Wellington’s work is helping people with dementia and their loved ones to understand what their journey could look like and the support that is available along the way. For Sue, having the opportunity to learn more about dementia was really helpful. “I’m a ‘why’ person so knowing what was happening and having help to navigate health services was truly transformative.”
Tailored support
At every support group, a range of people sit in a circle. They’re all from different backgrounds, are of different ethnicities, and have different stories.
“Although there may be an image that comes to mind when you think of someone with dementia, in reality it does not discriminate,” says Sheena. “While there are some contributing demographic and lifestyle factors, it can truly affect anyone of any background.”
Dementia Wellington works with different community groups to ensure they are meeting the particular needs of those communities. This includes the engagement of a kaitohutohu (advisor) Māori to build relationships with local hauora (health providers) to complement marae-based kaumatua (elder) programmes and ensure Māori have access to key information about mate wareware in a culturally safe way. Further, Dementia Wellington is working with a number of Pacific groups including churches to reach Pacific families and support their needs.
Importantly, Dementia Wellington is focused on creating dementia friendly communities and city, engaging with various providers to improve understanding and accessibility to a broad range services and advocating for key needs.
Unlocking hope for people living with dementia
“Due to factors such as an ageing population, people diagnosed with dementia are set to increase to over 170,000 by 2050,” says Anna.
To ensure they can keep up with demand for support services, Dementia Wellington started to think about how they could prepare for the future. “We know that as the number of people with dementia grows so will the need for our services.”
The trustees decided to establish the Dementia Wellington Fund with Nikau Foundation to diversify their fundraising and build an enduring, future-focused funding stream. All donations given to the Dementia Wellington Fund will be responsibly invested, grown, and protected to support all aspects of their mahi, long-term.
Honouring generosity
Individual generosity from donors has always played an important role in Dementia Wellington’s story. One such donor is Jeanette Brunton, a former trustee of Dementia Wellington. With her own experience of caring for a loved one with dementia, she wanted to make sure that Dementia Wellington could continue to offer the same support to others.
“Jeanette’s living bequest played a crucial role in our cash flow and ongoing viability as an organisation when we were really struggling financially coming out of the COVID period,” says Anna.
In recognition of Jeanette, the trustees have contributed a portion of her bequest to seed the fund to make sure Jeanette’s bequest has enduring impact on Dementia Wellington and the lives of people affected by dementia.
For Dementia Wellington supporters, the fund offers a special opportunity to play a powerful part in their future chapters and pass on hope to others. “Only people who have been impacted by dementia truly know how challenging it can be,” says Anna. “The fund provides a way to ensure Dementia Wellington is there to support others on similar journeys in a powerful and futureproofed way.”
“Dementia is one of the biggest health challenges facing New Zealand's ageing population,” says Anna. “Families impacted are more often left feeling exhausted and overwhelmed and don't know who to turn to. With increased funding Dementia Wellington can reach and support more families facing the fear and confusion of dementia to know they are not alone.”
Donate to pass on hope to people impacted by dementia, long-term.
All donations, however big or small, have the capacity to make a transformative impact for people living with dementia, long-term. To make a contribution to the Dementia Wellington Fund, you can donate online, via internet banking, or leave a gift in your will.
1. Donate online
You can donate online here.
2. Internet banking
Westpac – Lambton Quay – 03 0502 0163248 001
Please use ‘DWF’ as a reference and let the Nīkau Foundation team know by emailing accounts@nikaufoundation.nz with your name, address and noting that you would like to support the Dementia Wellington Fund.
3. Leave a bequest
If you’d like to leave a gift in your will to Nīkau Foundation’s Dementia Wellington Fund, you can add the below statement in your will:
To transfer (x% of the residue of my/our estate or whatever sum you wish to leave) to Nīkau Foundation (CC24793) to be paid into the Dementia Wellington Fund to be dealt with by the trustees of the Foundation in accordance with the terms of that Fund.’
If you’d like to leave a bequest to the Dementia Wellington Fund, we’d encourage you to touch base with Nīkau Foundation so they can keep in touch, provide additional information and updates about the fund as it grows and provide policies on their gifting policies.
To touch base, please get in touch via info@nikaufoundation.nz.
