For Alzheimer's: When I get older, losing my hair

Disrupting the 100-year old nursing home industry is more challenging than disrupting the taxi-cab monopolies taken on by Uber.

Notwithstanding the reported 44% rate of abuse in nursing homes, and the common pattern of introducing psychotropic medications to make the residents more pliant and docile, the industry is booming (so many aging baby boomers, after all).

But the Dementia Friendly Community is having success at doing exactly that – disrupting the nursing home industry.

What is a Dementia Friendly Community?

Broadly, the Dementia Friendly Community is your community, but where people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.

More Details Please!

Dementia friendly communities are springing up in England, Ireland, Singapore, Australia, and in states like Minnesota and Wisconsin...and they have these goals in common:

  1. Involvement of people with dementia
  2. Shape communities around the needs and aspirations of people living with dementia alongside the views of their caregivers. Each community will have its own diverse populations and focus must include understanding demographic variation, the needs of people with dementia from seldom heard communities, and the impact of the geography, eg. rural versus urban locations.

  3. Challenge stigma and build understanding
  4. Work to break down the stigma of dementia, including in seldom heard communities, and increase awareness and understanding of dementia.

  5. Accessible community activities
  6. Offer organized activities that are specific and appropriate to the needs of people with dementia. Also ensure that existing leisure services and entertainment activities are more inclusive of people with dementia.

  7. Acknowledge potential
  8. Ensure that people with dementia themselves acknowledge the positive contribution they can make to their communities. Build on the goodwill in the general public to make communities dementia friendly.

  9. Ensure an early diagnosis
  10. Ensure access to early diagnosis and post-diagnostic support. Have health and social care services that are integrated and delivering person-centered care for people with dementia in all settings.

  11. Practical support to enable engagement in community life
  12. Deliver a befriending service that includes practical support to ensure people with dementia can engage in community life as well as offering emotional support.

  13. Community-based solutions
  14. Support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes. Community based solutions to housing can prevent people from unnecessarily accessing healthcare and support people to live longer in their own homes.

  15. Consistent and reliable travel options
  16. Ensure that people with dementia can be confident that transport will be consistent, reliable and responsive and respectful to their needs.

  17. Easy-to-navigate environments
  18. Ensure that the physical environment is accessible and easy to navigate for people with dementia.

  19. Respectful and responsive businesses and services
  20. Promote awareness of dementia in all shops, businesses and services so all staff demonstrate understanding and know how to recognize symptoms. Encourage organizations to establish strategies that help people with dementia utilize their business.

Is this Dementia Friendly Community in Harmony with the Needs of People Living with Dementia?

The broadly defined goals of the Dementia Friendly Community closely conform to needs of those living with dementia. The National Dementia Declaration for England (Dementia Action Alliance, 2010) captured seven outcomes, as described by people with dementia and caregivers, that are needed to live well with the condition:

  1. I have personal choice and control or influence over decisions about me.
  2. I know that services are designed around me and my needs.
  3. I have support that helps me live my life.
  4. I have the knowledge and know-how to get what I need.
  5. I live in an enabling and supportive environment where I feel valued and understood.
  6. I have a sense of belonging and of being a valued part of family, community and civic life.
  7. I know there is research going on which delivers a better life for me now and hope for the future.

What’s the Economic Case for Dementia Friendly Communities?

The Alzheimer’s Society of the UK, in its 2013 survey/report rolled up its sleeves to answer the question about hard dollars and the dementia friendly community stating, a year living in the community with dementia (excluding the initial memory services assessment) is estimated to cost £24,128. This includes the cost of an integrated health and social care package, together with respite, therapies and medication.

A year in residential care costs an average of £35,424. Therefore, for every person who is able to live at home rather than in residential care there is a saving of £11,296 per year or £941 per month. Therefore, if just 5% of admissions to residential care were to be delayed for one year as a result of dementia-friendly communities, there would be a net saving of £55 million per annum across England, Wales and Northern Ireland.

The Future

What we know now is that that the financial and human costs of our warehousing approach to “looking after” people with dementia are unsustainable, and morally suspect (see Maja Daniels’ photo essay on a “memory care” unit in Northern France).

Disruption is next.

In the next post, I will detail case studies of how communities around the globe are realizing the goals set forth for the dementia friendly community.

Stay Tuned