Cure or Care?

I am sitting on the plane from Washington DC to San Francisco and I wonder how I can possibly capture this amazing week into a short blog and give it the justice it deserves. The National Alzheimer’s Disease Plan (USA’s equivalent of our dementia strategy in Scotland) is a good starting point. 

The Plan was signed off by President Obama in 2012 and is annually updated. At first glance it seems to focus on finding ways to prevent and effectively treat Alzheimer’s by 2015 as the main priority and so I’m heartened when I read on and have discussions with key individuals and organisations this week that there is much more to the Plan. Enhancing care for Alzheimer’s patients; expanding support for people with dementia and their families; improving public awareness; and carefully tracking data to support these efforts are also part of the plan and it is these areas which  grab my attention during my visit.

Through my discussions with Government officials, lead organisations and individuals at the cutting edge of dementia practice in the USA, I get a sense of the scale of the challenge but also about the efforts to continue to drive care quality for people with dementia and their family carers. Unlike the UK there is no national health system and so I learn about the complexities of health insurance in the USA and how Medicare and Medicaid are supporting  the health needs of people with dementia.

This week has been invaluable in providing me with the strategic context for dementia across the USA. I have been inspired to hear about the work of the Administration for Ageing, National Alliance for Caregiving, Patient Centred Outcome Research Institute, LEAD Coalition, Cognitive Solutions, Alzheimer Association and the work of US Against Alzheimer’s. These organisations and initiatives are all contributing to a social and political movement to improve the experience for people living with dementia and I am inspired to find out more.

During the past week I have heard about exciting initiatives including: Dementia Friendly America, public health campaigns such as ‘Know the Ten Signs’ and ‘Healthier Habits for a Healthier You’. I have learned about annual advocacy events where 1,000 people with an interest in dementia (many with lived experience) come together with Congress to share experiences and keep the spotlight on dementia at the most strategic level. I have heard that Alzheimer’s Association have 600,000 advocates for dementia. I have learned about the Centre for Medicare and Medicaid Innovation Fund and how these projects are informing practice. I have learned about patient powered research networks and how they are supporting and valuing the experience of people living with dementia as part of the research agenda. I have heard how 77 organisations are collaborating on dementia through LEAD Coallition to share practice, ideas and work together as a force for change.

Like other countries around the globe, USA a is not without its challenges. According to the Alzheimer’s Association, 5.3 million Americans have Alzheimer’s disease. Of the 5.3 million Americans with Alzheimer’s, an estimated 5.1 million people are age 65 and older, and approximately 200,000 individuals are under age 65 (younger-onset Alzheimer’s).  Diagnosis rates, transitions between care settings, the size and diversity of the country all add to the complexities. However there is no doubt that dementia has never before been receiving such attention and there are real opportunities to capitalise on the momentum being galvanised and to continue to learn from innovative examples and initiatives. 

Thank you to colleagues in Washington DC . It has been a remarkable week in an amazing city and I now look forward to seeing dementia care quality in practice as I continue my journey to Northern California where I will spend the next week with Kaiser Permanante and spend time with Alzheimer’s Association.

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