Kevin Jameson used his own real-world experiences of dementia to create an innovative US organisation that is changing lives every day.

Here Kevin explains why he set up the Dementia Society of America.

Kevin Jameson was determined that his ‘vivacious and beautiful’ wife, Ginny, would receive the best care possible when she was diagnosed with dementia.

But finding all the information he needed was a little more difficult than he’d anticipated. ‘Everything most people talked about was only Alzheimer’s. There wasn’t a broad-based dementia organization in existence where I could turn to and pick up the phone and get answers,’ says Kevin. ‘At least I couldn’t easily find one.’

Looking back, many years later, he came to believe that her dementia may have been caused or triggered by a concussion she sustained in a car accident, and he still isn't 100% sure, but as he watched her slow, steady decline, Kevin felt helpless. ‘Dementia is a fatal condition, and it was emotionally painful to see Ginny shut down.’

In 2013 Kevin retired from work so that he could spend more time with his love of 31 years. But with several years’ experience of dementia already behind him, Kevin also had another plan; to use all he’d learnt so far to create a non-profit organisation providing information, advice and practical and emotional support about dementia to anyone who needed it. He named it the Dementia Society of America.

Four years later, the society has grown rapidly, running regular training programmes to educate and inform and to tackle the taboos and stigmas surrounding dementia. The society also offers information and links to current clinical trials, helpful technologies, and many creative non-medical therapies particularly centred around music, art, movement and touch. Crucially, the society also has a 24-hour phone-line.

‘We’re educating thousands of people who are in search of meaningful solutions,’ says Kevin. ‘We’ve established a national and international presence to help more and more people who are seeking support.’

There are also reasons to be cautiously optimistic about dementia research, says Kevin. ‘As our ability to image the brain gets more and more precise, we’re seeing relatively new neurodegenerative diagnoses of those who, at one time, were blanketly thought to have Alzheimer’s. These scientific advancements will hopefully lead to a deeper understanding of our brains, the various complex mechanisms that cause dementia, earlier detection, prevention, and even possibly, lasting interventions.’

Meanwhile, thanks to the extraordinary generosity of thousands of people, donations to the Dementia Society of America have reached more than $500,000 (mostly from small individual donations) and are used, in part, to fund the society’s grants programme, aptly named Ginny Gives.

Ginny herself passed away with Kevin at her side, but the Ginny Gives grant programme is keeping her memory alive, and will ultimately enable more and more people in the US, and Canada, to live more enjoyable lives with dementia.

‘Dementia changes almost everyone it touches,’ says Kevin. ‘Seeing the world through the lens of a cognitive challenge tests even the heartiest souls to wrestle with the meaning of life. That said, if you strive to adjust your thinking and take positive steps forward, despite any impairments, you soon realise that it’s like any other facet of our existence … this too shall pass, and as it does, we should attempt to make the best of it.’

3 tips from Kevin

If you or a loved one was recently diagnosed with dementia, Kevin offers the following suggestions:

1-Take a deep breath. Seek to understand the freight train of stress-factors soon to be upon you, and imagine how you will cope. Talk with others to gain some perspective.

2-Make it your job to get social, connect and reveal the situation to friends and family. Those that ‘get it’ are to be cherished, those that don’t can be forgiven

3-Take time to think and plan your future. Journal your days. Turn stumbling blocks into stepping stones, and as a person living with dementia, or as a carer, set out to help others and live your live to the fullest.

www.dementiasociety.org