In the professional side of dementia care, there has been a push in recent years to reduce the stigma associated with having dementia and being a caregiver for someone with dementia. This is often referred to in the academic literature as “normalizing dementia,” or making it more normal for people with dementia to be part of their communities. On the large-scale end, the World Health Organization has formed a Global Network of Age-Friendly Cities (which you can read more about in my post on my Internship on Age-Friendly Cities), which sets guidelines, milestones, and recommendations for communities who would like to be part of the network (you can read more about that here). While the focus is not on dementia only, guidelines and policy making are a step in the right direction so that citizens and residents of all ages and ability levels can truly be a part of their community.
What would you think of a community that acknowledges the potential of people who have dementia? What about a community in which business and service workers have the skills to help people with dementia use their services safely and successfully?
Communities in the US and the UK are doing just that. In a town in Wisconsin, local businesses have formed the Watertown Dementia Awareness Coalition. Employers are working to make their environments “more dementia friendly and easier to navigate for a person with memory loss.” Employees are getting awareness training, and people with dementia are attending Memory Cafes, or gatherings filled with laughter, learning, and friendship.
In England, East Staffordshire is set to become dementia friendly. One of 20 communities that the UK’s Alzheimer’s Society is working with to be more inclusive of people with dementia by 2015, the district aims to provide people with sensitive care and support. A hospital in Burton has a head start: Staff at Queen’s Hospital have been recognized for improving their care of people with dementia, and each ward has a dementia champion who works with staff to help them understand and honor the needs of people living with condition.
We all enjoy getting away and having a break from the normal day-to-day. Including people with dementia.
Typically, the largest barriers for taking someone with dementia on vacation or other travel include:
Mobility difficulties, like getting in and out of vehicles
Anxiety, not knowing where they are going or why
Care issues, that they need full-time care while on vacation
Financial constraints, because it is expensive to hire a caregiver to come on vacation with them
Lack of appropriate places to go on vacation, because people with dementia will have different needs than a traditional vacation spot – stairs or uneven surfaces, confusing hallways, bathrooms that are too small, crowds, and over stimulation are very real concerns when taking a person out in a community
These are some of the primary concerns that caregivers and family members have when planning a getaway with someone with dementia.
But, there is hope!!
Trees springing to life in Nørresundby cemetary
Many researchers and professionals who deeply care about making life better for people with dementia (myself included!) are working on ways to keep them integrated into the family and society. There are even international efforts to promote that places be accessible for all people – including those with dementia.
And you can help!
Since there are very few places that are designated as vacation destinations for people with dementia, most of our understanding on the barriers to vacations with dementia are based on what families and caregivers find out the hard way. If you have been on a vacation or traveling with someone with dementia, I would really appreciate if you shared your experiences. If you are thinking of traveling with someone with dementia, I would also appreciate if you shared your concerns and hesitations. Even though I have worked as a caregiver for several years, I know that the full-time, family caregivers (often a wife or daughter) are the true experts in dementia care.
Speaking up about dementia, sharing our experiences, and voicing our concerns are one of the fastest ways to break down stigmas surrounding dementia and caregiving AND to ensure that services designed for them are addressing the real issues.
AgeCAP is an app that is being developed so that users can rate the age-friendliness of a location or service. Users can also read the ratings to find suitable places. (I have downloaded this app for Android and it doesn’t seem to be fully functioning yet – I will be sure to update this post once it is). You can read about their work (and participate in a research study in the Toronto area) on their website. Age-CAP is a free download in iTunes and Google Play (the links will take you directly to the app).
Age-CAP is a cross-platform smart phone application which aims to create a crowd-sourced database of age-friendly locations. It consists of survey-style forms which allow users to quickly rate the age-friendliness of a location or service. The criteria for rating was developed using the World Health Organization’s Global Network of Age-friendly Cities guidelines (which I also worked on during my internship with the WHO in Copenhagen), and age-friendly community initiatives in other North American cities. Users are also able to browse submitted ratings to assess the age-friendliness of locations in their neighborhood, providing them with information that would otherwise be unavailable.
“An age-friendly environment fosters active ageing by optimizing opportunities for health, participation and security in order to enhance quality of life as people age”
Similarly, the AARP has a guide on age-friendly communities, and serves as the coordinating point for the USA in the Global Network of Age-friendly Cities.
Dementia Adventure (no connection with this blog, other than a passion for improving the lives of people with dementia) is an organization that lists dementia-friendly venues (all in the UK, for the moment). They also offer consulting and training services, so that locations can become more dementia-friendly. Truly, a up-and-coming social service!!
Thanks for reading this post, and please take a minute to answer the poll or to post your experiences and concerns in the comments. I will even get the ball rolling…..
When I was a caregiver in Denmark, we (myself and another caregiver) accompanied the woman on holiday in Spain. It was a great trip, we had a lot of fun, enjoyed getting away and seeing new things, trying new foods, watching new people. The largest barrier we faced was that many places weren’t wheelchair accessible. This meant we had to lift the chair up stairs to get into restaurants or bathrooms, carry the person up flights of stairs and then go back down for the wheelchair and luggage, and we even found the elevators were out of order at the train station when we first arrived! (This was one time when Danish women were a little happy for the Spanish machismo) – After about 3 flights of stairs and another 3 to go to get above ground, I welcomed the help! Looking back, I would do it all over again. We all had a good time and these challenges in public spaces are kind of part of the job – plus they really opened my eyes to barriers I hadn’t noticed before. It was hard work, but there were no major meltdowns, no one got sick, and no one was any worse for the wear. We all had a good joke that we “needed” our nightly ice cream so we didn’t work ourselves to the bone 😉