Creating Dementia Friendly Communities: some thoughts

I first heard of “dementia-friendly community” because of the work of Norman McNamara (more popularly known as Norm Mac, or just Norm). Norm was diagnosed with dementia some years ago and has, in addition with coping with his dementia problems, worked tirelessly to spread awareness of dementia and to make sure that inputs from persons with dementia are heard and valued by policy makers and others working in the field of dementia. He has also been working to make Torbay, UK, a dementia-friendly community (read about the Torbay Dementia Action Alliance).

It seems obvious (once one pauses to think of it) that persons with dementia must be treated as major stakeholders in decisions and actions that will impact them. The best way to support persons with dementia is to ensure that the community around them is dementia aware, friendly, safe, and empowering so that they can live as normal and fulfilling a life as possible. But creating dementia-friendly communities requires work on multiple fronts, and implementation has been low. The U.K. is in the forefront of this work, with some other countries getting more active recently.

In August 2013, Alzheimer’s Society released a very interesting report, that can be downloaded: Building dementia-friendly communities: A priority for everyone. This defines a dementia-friendly community as follows:

A dementia-friendly community is one in which 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.

This report provides data from surveys of persons with dementia, describing their experience of living with dementia and the difficulties they face. It suggests actions that can help create a dementia-friendly community. Information is also available on their website here. There are many websites where concerned organizations discuss related concepts and provide data from surveys and on projects they have undertaken: some examples are Creating Dementia Friendly Communities (Ireland), UK Health Dept’s page on dementia friendly communities, Innovations in Dementia CIC.

From what I understand, the concept of dementia-friendly communities is still evolving, and definitions, interpretations and approaches vary from culture to culture. The concept fascinates me, and I’ve been thinking about it and how it would work in the culture and setting I am most familiar with, namely, India.

I think one essential component of a dementia-friendly community is having enough awareness and support to ensure early diagnosis so that the environment and support around the persons can be tuned to help them remain independent and retain their quality of life in spite of cognitive decline. The systems and people they interact with should be dementia aware. There should be no stigma attached to a dementia diagnosis. People should know how to interact with someone who may be disadvantaged sometimes because of dementia.

Creating a dementia-friendly environment is likely to require redesigning various services and facilities so that persons with dementia can avail them without facing problems. This is not just for medical services, but for all activities persons may engage in, whether it be dining out or shopping or interacting with tax officials or using public transport or walking in a park. For persons living independently, we need products and services so that they can continue to live independently and enjoy a good quality of life while also remaining safe.

And, of course, a dementia-friendly community also has to be friendly and supportive to the caregivers helping the person with dementia.

The wide-sweeping levels of understanding required to create a dementia-friendly community makes my mind boggle. I’ve been trying to imagine this sort of scenario in India, where awareness is so low and stigma so high that most patients are unable to have a life outside their homes because of the comments and criticism they or their families face. Typically, systems are so unfriendly that the spaces outside home are rendered inaccessible to persons who have dementia. In our country, where even caregivers hide, how often do policy makers and organizations seek the opinion of persons with dementia to understand their experience and needs? Even diagnosis is uncommon in early stages.

I’ve often found our community having large numbers of dementia-deniers, dementia-criticisers, or dementia-indifferent. The move to make a community dementia-friendly seems a major transformation; I’d be happy enough if the community around us becomes sufficiently dementia-aware. Awareness of dementia and its impact (and removal of stigma) are, to my mind, foundational elements and achieving this would itself create major improvements. We would have earlier diagnosis. Caregivers and patients would be more willing to speak up about their situation and problems, and seek assistance and support. The process of change would start.

It is interesting to note in this context that some pilot work on dementia-friendly communities has been done in India. The ARDSI National Office took up the challenge of making Cochin a dementia-friendly city, and their project won the first ADI MetLife award for the best dementia education project.

Babu Varghese of the ARDSI National Office shared information on this project at ARDSICON2013 (18th National Conference of Alzheimer’s and Related Disorders of India) in Guwahati, November 2013, where he talked of what they did and the way forward, hoping that such projects will be undertaken in more cities. Below are some slides from his presentation (reproduced with his permission):

slide showing awareness project objectivesslide showing awareness project components
slide showing strategy to build dementia friendly communitiesslide showing outcome of the dementia friendly project activities

(To view larger images of the slides, click on a slide to open the image a new window)

I’m sure anyone whose life has been touched by dementia would like to see our community become more dementia aware, more friendly, and more supportive. But major changes like this need ideas and contributions from across the board. The slides above may get us started on generating more ideas on activities to undertake and concerns to address. Let’s share them.

Another important aspect is how to create dementia-friendly environments faster. Time, effort, and resources are limited, and we need to use them effectively. Some actions affect the persons we educate/ train/ help–such actions are helpful and productive, and desirable. But some actions are more effective because they have a multiplier effect; these are actions where the persons we educate/ sensitise/ train go on to become advocates in their own right, thus helping us spread the message more rapidly. Given the massive levels of ignorance and the sheer amount of work required to overcome them, we may be best served if we focus our initial efforts on areas that help us spread awareness much more rapidly, pulling in more and more people into the cause.

Please do share any ideas or concerns as comments below (remember, you can share your thoughts anonymously if you prefer).

Edited to add: If you are concerned about dementia/ care in India and are a volunteer/ potential volunteer/ just want to know more, please do check out this page: Resources: If you want to help caregivers/ spread dementia awareness. This page includes links to several discussions on areas that individuals (or groups/ corporates) can consider for contributing their own bit for this cause. There are also several resources/ documents that can be viewed/ downloaded in this section.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s