Dementia challenges the tourism industry

I came across this post on the Remembering4You blog. Ethelle Lord is a Professional Alzheimer’s Coach and founder of Remembering 4 You (pioneering Alzheimer’s coaching by training and certifying people in coaching other professionals or families involved in dementia care). She is also the designer of the Alzheimer’s Friendly Healthcare Workforce™ model of care (a model to shift from a medical model to a care model). I first came to know Ethelle Lord through the International Caregivers Association (ICA). The ICA is a global association that addresses Alzheimer’s disease and other dementias for the people who are living with them and their families and caregivers. The ICA provides resources, including online education, coaching, and support services.

This article is about how people with dementia still enjoy traveling, even for years post-diagnosis. The travel industry needs to accommodate these customers to allow ALL people to safely travel.

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Tourism for adults 55+

Crowd-sourcing age-friendly locations

AGE-CAP (AGE-FRIENDLY COMMUNITIES ASSESSMENT APP)

 
The Intelligent Assistive Technology and Systems Lab (IATSL) at the University of Toronto (Department of Occupational Science and Therapy) has developed a smart phone app to create a crowd-sourced database of age-friendly locations, called Age-CAP. They are a multi-disciplinary group of researchers (engineering, computer science, occupational therapy, speech-language pathology, and gerontology) who aim to develop zero-effort technologies (technologies that require zero effort from the “user”) that are adaptive, flexible, and intelligent.
You can read more about their work (and participate in a research study in the Toronto area) on their website.

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.

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Take Advantage of the Summer Weather

How Older Adults and Caregivers Can Take Advantage of the Summer Weather

This is a re-post from our friends at agingcare.com, offering ideas for getting outside and enjoying the summer weather together!

Enjoying a breezy spring day or the warm summer temperatures don’t have to be a distant memory for elders and caregivers. After being cooped up in the house for possibly months at a time, senior adults can breathe in the fresh air, even if they are experiencing mobility problems. It takes some advance planning and choosing an activity that won’t seem like a chore, but it’s worth getting out of the house, for you and your elderly parent.

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Caregiving at a Cookout

Caregiving at a Cookout:  Tips for a Good Time

This is a re-post from agingcare.com, a great website with plenty of ideas and resources for caregivers.

Almost everyone looks forward to gathering with family and friends for a backyard barbecue. But if you’ve been dreading going to one because of your responsibilities as a caregiver, never fear: Both you and your elderly loved one can have a fine time, if you plan ahead.

But first, make sure that your relative is in good enough health to attend a party where there will be heat, bugs, noise, smoke from the grill and possibly rambunctious children. Also, check with your hosts to ensure that they understand and can accommodate your loved one’s limitations. If not, find another caregiver to look after your relative while you attend alone; it’s important for you to socialize and recharge.

However, if your hosts are amenable and your loved one is up to it, don’t leave him or her behind. Joan Wright, a certified geriatric manager at NVNA and Hospice in Norwell, Mass., told AgingCare that you should remember that every elderly person was once young, mobile and eager to socialize. “Those desires are still there even if their physical capacity to fulfill them is not.”

Here are some tips from Ms. Wright and others to ensure that everyone has a good time:

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10 Ideas for Outings

10 Ideas for Spring Outings

This is a re-post from agingcare.com, and I am happy to pass on some good ideas for your dementia adventures!

Many aging adults spend the bulk of their time just managing to get through the day. They take care of life’s basics but often don’t leave their home, assisted living center or nursing home, except for doctor appointments and an occasional holiday.

Families and friends might like to take a senior out for some fun but they don’t know how to go about it. Even seasoned caregivers can be stumped for ideas, so here are a few to get started:

  1. Take a Sunday drive. When I was young, driving around the community to check out home town activity was a Sunday afternoon ritual for many adults. While life is more complicated now, many elders still enjoy watching new construction or being shown how the town that they’ve lived in for decades is changing. For those who live near flood prone bodies of water, spring is a terrific time to take a drive to see how this year’s water levels compare to other years. A twist on this approach is to pick a prime time when cherry trees, crab apple trees or other ornamentals are at their peak and do a flower tour. Getting out of the car is optional, based on your elder’s abilities and wishes.
  2. Go to the zoo. Who doesn’t like baby animals? Spring is birth time for most species. Rent or borrow a wheelchair if one is needed for longer walks. Not only will your elders see baby animals, they will see young children reacting to the animals. As with everything suggested, watch your loved one for signs of fatigue, thirst, too much sun or other issues that could signal that it’s time to leave, perhaps with a promise to return at another time should they wish to do so.
  3. Go to a restaurant. When was the last time you took your elder to a restaurant that he or she has enjoyed over the years? Now that snow isn’t a problem, it’s easier to navigate such adventures. Keep in mind that going for a meal at off-peak times is a good idea. That usually means less stress for everyone. Also, elders who are hard of hearing won’t feel as isolated if there’s less background noise.
  4. Visit a Dairy Queen. One of my mom’s favorite treats was a hot fudge sundae from Dairy Queen. I’d often take her to get a sundae on the way home from a doctor visit or other necessary outing, but occasionally we’d go to Dairy Queen just for something to do. She preferred sitting in the car to eat, but I do suggest encouraging your loved ones to sit outside if the weather’s nice and they are able.
  5. Enjoy children at play. Watch children swim or play on playground equipment. Spring brings young children out in throngs. People who enjoy children often like hearing their laughter and watching the seeming innocence of this type of play.
  6. Spring programs. Take your elder to the spring programs that most schools sponsor. This is particularly nice if a grandchild or great-grandchild is involved, but that’s not necessary. If your elder doesn’t know any of the children, then I’d suggest focusing on the younger ones. They tend to be “cuter.” However, if grandchildren are involved, take your elder to watch them perform in their concerts, plays or other activities. You may have to arrange for a spouse or friend to be available to take Grandma home if she gets tired or uncomfortable. A twist on this idea is to attend one of the concerts in the park that many communities have during the spring and summer.
  7. Have a picnic. Whether you go to a park, stay in your own backyard or use the grounds of the nursing home, a picnic is often possible. If your loved one is able, going to a park would be nice, however many nursing homes have gorgeous grounds and nice areas with tables that accommodate wheel chairs. If all else fails—and I’m aware that this isn’t an outing but sometimes we have to punt—bring a picnic to your loved one in the care home.
  8. Check out the crops. If your elder has an agricultural background or is interested in wildflowers, try taking a country drive. My parents didn’t have any first-hand agricultural experience, but they still enjoyed driving in the country to see new crops being planted and wild flowers blooming. Tailor this outing to your area of the country and your elder’s preferences.
  9. Go fishing. A friend told me that his community sponsors events where elders are taken out on pontoons—wheelchairs and all—to fish. Volunteers are there to help with anything the elder can’t do. Just being out on the water and holding a rod can be a thrill for someone who has enjoyed fishing in the past. Again, this can be adjusted to accommodate other pastimes.
  10. Visit a friend. Many elders lose touch with their peers. Sickness, the death of a spouse and/or difficulty getting around can mean they haven’t seen a dear friend for months or even years. See if you can set up a lunch or just a visit with someone your loved one has enjoyed through the years. Perhaps you can take them both to a park or a restaurant.

Use these ideas as springboards. You know your loved one. What did his or she enjoy in their earlier, healthier days? Don’t be afraid to ask what they miss doing or what they’d like to do. They may not hear those questions very often these days.

If you get a shoulder shrug or an “I don’t know,” then be ready to say, “Sunday looks nice so we’ll go for a picnic.” You may get some resistance but if it seems like simple inertia, just say with a smile that it would make you very happy if they’d do this for you. If a loved one truly doesn’t want to be part of an activity, try whittling down your expectations and suggesting something less strenuous.

As mentioned above, during any of these activities monitor your loved one for dehydration and heat issues if the weather is warm, or chilliness if it’s cool. Older bodies don’t adjust to temperature changes as well as younger ones. Be prepared with sun hats and hooded windbreakers. Also, bring water to drink and watch for fatigue.

And remember, you are doing this for pleasure, so don’t overdo anything.

Dementia Adventure – Wood if We Could

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.

From the Director of Dementia Adventure

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…… 😉

In the shoes of … Neil Mapes | Director | Dementia Adventure CIC

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.

We have had over 70 guest posts so far. I have written a couple myself talking about the important role of nature  and specifically the  ‘Let nature feed your senses ‘ project. Neil’s team is making outdoor experiences a reality for more and more people.  I personally feel you do not need mountains of research to know that getting outdoors is GOOD FOR US!

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’! 

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Accessible tourism with dementia

Want to take a vacation with someone living with dementia? Great! Here are some tips to help you plan.

This text is from dementiacare.org.uk about taking someone with dementia on holiday.

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 connects people living with dementia with nature and a sense of adventure. More information available at www.dementiaadventure.wordpress.com
  • Tourism For All is the UK’s voice for Accessible Tourism. A national charity, they are dedicated to making tourism welcoming to all www.tourismforall.org.uk

And this list of additional resources was taken from another blog, called Dementia Journeys.

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Social enterprise – Dementia Adventure

Dementia Adventure connects people living with dementia with nature and a sense of adventure.

Dementia Adventure

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.

For more information: http://www.dementiaadventure.co.uk/

The biggest barriers for taking dementia on vacation

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 in Nørresundby Kirkegård

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.

You can read more about the World Health Organization’s Global Network of Age-friendly Cities and the cities that have joined. Heck, if you want to really make a difference in the lives of others, write your local mayor and suggest your city join the network!

“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 😉