Thinking of traveling this summer? When you are young, you go with the wind, but as you are older, there are a few more considerations to, well, consider. This is a re-post from Senior Planet, and I hope it inspires you to travel and gives you a few tips to make it more enjoyable.
On the road again
Last week in Aging With Geekitude, Erica kvetched about unusable user manuals and offered her tips for anyone who’s given up on getting any help from them – read about it This week, with summer travel season heating up, she’s sharing her favorite tech for your next road trip.
I adored travel when I was young – throwing a few things in a suitcase and taking off was the ultimate in excitement – but unfortunately, I got old and curmudgeonly. The very thought of deciding what to pack causes me severe anxiety. I need multiple pairs of shoes in case my feet act up. I wind up at my destination wondering how I could have possibly miscounted my medication so badly.
The answer: a road trip.
Recently I forced myself to visit Florida (this was a matter of life and death; if you survived the last winter in the Northeast you know what I’m talking about) and instead of flying, I got in my car and drove all the way. My cozy Ford Focus wagon is like my home – I don’t have to worry about what to pack, I just take enough for a 20lb weight loss or gain, plus all my meds. I don’t have to leave on time or worry about the size of my backside causing dirty looks from disgruntled seat mates. Eight hours a day driving alone is no picnic, but I discovered the secret of long car trips – pick a really suspenseful audiobook. My favorites this trip; Falling Glass by Adrian McKinty;Raising Stoney Mayhall by Daryl Gregory which I found through Audible’s daily deals. (Check out my column about the wonders of Audible.com.)
Here are my road trip tips – highish and lower tech.
This is taken from the introduction of the Dementia Adventure’s guide to leading group adventures and visits to woodland areas for people with dementia. You can download the booklet or read it here.
The result of a partnership between the VisitWoods team at the Woodland Trust, Dementia Adventure CIC, and Tony Vale at Activity Team, this guide builds on the successful pilot project which Dementia Adventure led in 2011. This pilot was called “Wandering in the Woods”. The report, which outlines the physical, social and emotional beneﬁts of woodland visits for people living with dementia, along with the three supporting ﬁlms, is available at www.dementiaadventure.co.uk.
VisitWoods, Dementia Adventure and Activity Team shared a vision that it is possible for people living with dementia to safely and enjoyably beneﬁt from visiting woodland. The reality for many people living with dementia in care settings is that they often have little or no access to woodland. At the same time there are some extremely committed staff and family members who are successfully enabling small groups of residents to get out into nature. We all strongly felt that there are solutions and practical resources, which if collated and shared, would lead to more people living with dementia in care settings to beneﬁt from visiting woodland, as well as other natural spaces.
This enabling, informative and practical guide is aimed at older people and people living with dementia, who can often ﬁnd themselves excluded from participating in or enjoying activity out in woodland. This adaptable and engaging resource helps to:
• Provide inspiration and information to enjoy woodland activity
• Outline the beneﬁts of woodland activities
• Reduce the perceptions of barriers to accessing woodland
• Increase conﬁdence in accessing woodland by sharing solutions to common barriers
• Share resources to help group leaders to visit woods
• Provides inspiration and resources to help group leaders plan visits to other green space/natural settings
The guide is also available online and the authors welcome feedback, comments and other helpful resources which we can share to keep this work relevant and up to date.
“We too should take a vacation from our caregivers… enjoy the company of other people with dementia…”
It would be my hope that my envisioned Vacation Village would not promote stigma, but would be a place where people with dementia can come and enjoy the company of their families and others while taking a little break from everyday life and enjoying nature.
I have tried to avoid stigmatizing dementia in my ideas for this vacation place – starting with avoiding a name that includes dementia, like Dementia Village or Dementia Vacation. The point, rather, is to make a vacation spot that anyone would enjoy, and is accommodating, so that both the caregivers and the person with dementia can enjoy their holiday.
This is an interesting post on the stigma of dementia and how it is misconstrued and misused in ways that truly don’t benefit people who are living with the syndrome (or their families and caregivers).
I came across this blog post on the Whose Shoes? blog (a suggested read on personalization in health and social care, by the way). Neil Mapes is the director of Dementia Adventure, which is pretty close to one of my ideas for normalizing dementia in tourism and creating safe places for people with dementia to go with their families on vacations. It’s a good interview with him and about the importance of his company, Dementia Adventure. By the way, Neil, if you are looking for a new colleague, feel free to contact me…… 😉
Happy New Year everybody. #DementiaChallengers are on a roll for 2013, determined to speed up the pace of positive change for people living with dementia and their carers and improve quality of life. And what a refreshing start to the New Year we have here…!
This guest blog is from Neil Mapes, Director of the innovative and award-winning ‘Dementia Adventure’. I am delighted to be able to include this contribution to our ‘in my shoes’ series, looking at dementia from different perspectives. I am a big fan of Neil’s “can do” attitude – it takes a pretty special person to plan sailing holidays for people with dementia in our risk-averse, increasingly litigious ‘elf n’ safety’ society.
Dementia Adventure is a breath of fresh air for people living with dementia in all senses (literally) – touching, smelling, feeling, tasting and not least hearing the good things that nature has to offer. Most of us take these things for granted – I’d argue that being able to continue going outdoors in later life should be seen as a ‘human right’!
When dementia is first diagnosed it may be important to some people to fulfill lifetime ambitions and visit places they have always wanted to experience. As dementia progresses, however, people usually prefer to travel closer to home to familiar places. Also, coaches and trains can be more enjoyable than long car journeys.
Here are some suggestions of organisations that can help with holidays for people with dementia, and their carers:
Vitalise run supported holidays for people with dementia, and their carers at accessible holiday centres, 0845 345 1978, visit www.vitalise.org.uk
Dementia Adventure offers short breaks and adventure holidays for people living with dementia. Whether people live in care homes or in their own home, Dementia Adventure offers everyone the opportunity to connect with nature and meet others in the local community. The enterprise also works alongside care providers, local authorities and health services to help them support people living with dementia to get out into nature as much as possible.
The multi-award winning social enterprise have developed an evidence base for the benefits of nature activities for people living with dementia.
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 😉
This particular topic in dementia care interests me, because sometimes I dream of running a vacation property with cottages, tree, gardens, animals, and where families can safely bring a person with dementia on the family vacation.
There are an increasing number of “sandwich generation” caregivers, typically female family members, who are caring for their children as well as their aging parents. In this light, I would imagine that there will be increasing numbers of families who wish to vacation together and enjoy the good times.
From what I can tell from the market now, is that the main options for families in this position are to:
Put the person with dementia into an institution while the family goes on vacation (many long-term care facilities will take a person with dementia for a week of respite for the caregivers), and will cost an average in the US of $3000 for the week.
Find a caregiver to hire to come on vacation with you to take care of the person with dementia (through a local long-term facility, a caregiver already hired by the family, or a hired caregiver specifically for this vacation). These services might also include the family covering insurance, transportation, and hotel costs for the caregiver in addition to pay, easily totaling thousands of dollars.
Bring the person with dementia with and plan care shifts with the family going along (which will often fall back on to the primary caregiver – so they don’t really get the R&R they need).
So, like I said, I have some dreams and I would love to hear your opinions and thoughts:
What did/do you worry about when taking your loved one on vacation?
How did you find a way to give care?
What are your motivations for taking them on vacation with you?
What kind of care services would you expect, if you hired someone to care for your loved one while on vacation?
What are the “main things” a hired caregiver could take over or take off your mind, so that you can relax and enjoy yourself?
Sunset on Lake Patagonia (Arizona) at our campsite