To help a person with dementia remain in the community, it is important that they know their way around as they are less likely to get lost.
Sage, the project advisory group of people with dementia used a number of strategies to prevent them from getting lost and these included:
1. Acknowledging that a ‘blank’ might occur when out walking. This could cause a feeling of panic and this may make the ‘blank’ worse. Re-establishing calmness and waiting for the blank to clear was helpful.
2. Knowing the best time of day to go out for a walk when least confused – this may be in the morning or the afternoon – what ever time of day is best for you.
3. Use a route that is familiar. Walk routes that you know well and are less likely to get confused by.
4. Ask people for help if you get lost. This may be once you remember what you want to ask.
5. Take time to work out and remember landmarks, and remind yourself about route. This may help later on.
6. Repetition and routine were seen as key to continuing to stay safe. Pick a good route and stick to it.
7. Carry information to help you remember – home address and a phone number to contact someone.
8. Carry information about how to use mobile phone and who to call. You might ask a helpful person to make the call for you.
9. Carry ‘in case of emergency’ contact cards
10. Wear a bracelet that identifies that you have a memory problem.
If you are offered some technology, give it a try and see if it works for you – you may like it and it may help.
We hope this helps you prepare to stay safe out walking.
Physiotherapy students at the university of Southampton can hook up onto a live research project at the Faculty of Health Sciences.
Three students elected to get involved with the ‘Using Technology for Safer Walking’ project, Amy Broughton, Ange Briggs and Hayley Grainger.
Studying research methods courses over years two and three of their degree, the students learned about methods, developed a proposal for the research, applied for ethical agreement in year two. In year three they undertake the project and write an article for publication about it.
Currently at the point of data collection, the students have developed many skills and implemented them. They reflected on learning about research methods connected to real life project:
Having previously had no experience of research this module was very daunting for me as I had no idea what to expect.
Learning the theory and being able to put it into practise has provided an excellent learning environment. The opportunity of seeing a project through from start to finish and learning the ins and outs of what it takes to conduct research has provided me with much insight into the world of research, these skills will help me moving forward as I graduate and head into clinical practice.
The qualitative nature of this project has really highlighted how people interact with technology and their environment in day to day life, at times it seemed to make participants realise a few things about their own behaviours, seeing them reflect and realise was very interesting.
Qualitative research allowed me to gain an insight into my study from a participant’s prospective, from a holistic view. Using a semi structured interview allowed participants to take the lead and created interesting results that could not be predicted prior to the study commencing.
I was fascinated to learn about Ethnographical studies and seeing first hand how people interact with their surroundings and react when under observation. I was also intrigued to witness how the theory behind navigating, (a person must understand the relationship between the map, the space and themselves within that space) played out in practice.
Their research project examined how nine healthy participants, fellow students, negotiated navigating an unknown path using three different types of aid. The first was to have verbal instructions to follow. The second was to use a smartphone with GPS on it, and the third was a map. The participants who were given verbal instructions fared worst of the three groups, as all three of the participants got lost. The smartphones users found their way, but were distracted during the task which could be a safety issue, and the map users found their way once they had managed to orientate themselves.
The knowledge of where you are and how to get around is often taken for granted. Giving verbal instructions is usual, but even in healthy adults proved problematic. This is very important for us to know when considering how people with dementia may struggle to navigate. Even very familiar surroundings may be confusing, and take some time to work out and find a way. Verbal instructions, for the provider seem obvious, but of course for the receiver, are frequently oblivious. This is also something to bear in mind when we are thinking about how best to support a person with dementia – verbal instructions are unlikely to be effective.
Having completed the data collection, the students are ready to complete their analysis. We can update you further when that is complete and look forward to reading more about this fascinating addition to the Using Technologies for Safer Walking project.
Using Technologies for Safer Walking is a research project that aims to find out about the effectiveness of GPS technologies for people with dementia. We would also like to know what other sorts of technologies – anything that enables the person to find their way about – are being used. We are currently looking for people with dementia and family members to join our research project.
We are recruiting people in Hampshire. If you are using GPS or another technology, please do get in touch. If you are worried about going out alone and are considering limiting going out on your own, please do get in touch. If you would like to know more about GPS technologies and whether they might be right for you, please do get in touch.
Contact Tula Brannelly at Gpsstudy@soton.ac.uk or on 02380 597898.
On our ‘Using Technologies for Safer Walking’ project, we are in the process of collecting phase 1 data, and preparing to collect phase 2 data. We are noticing that there is a bit of uncertainty about using GPS technologies in terms of when they might help, and what has to happen for them to work. This short blog aims to answer some of those questions.
If you have dementia and go out alone, it is a good idea to carry something with you so that you may be found if you get lost.
A simple solution is a mobile phone as it has a GPS on it and the police can use it to find you. You do not have to use the phone, just carry it with you. Mobile phones (not smartphones) have a very long battery life and are cheap to buy.
Smartphones can be used to locate people using apps such as ‘find my friend’. If the person who goes out carries a smartphone with them, they can be located by a family member or friend who also has the app. This is useful if you are smartphone users and want a quick and easy solution, and are available for each other when the person with dementia wants to go out and about.
A GPS technology (pictured above) enables you to be found by family members, for example they may use a computer or ipad/tablet to locate the person who is out and about. This means that when you are out and about, they can search for you to see that you are heading in the right direction, or are on your way back when expected. This often provides peace of mind for both parties. For this to work, the person with dementia does not need to actively use the technology, just carry it with them. If they can actively use the technology, then there are variations of the GPS that can be used to make a telephone call, or call for help.
The GPS systems that have the call for help facility usually have a telecare backup element to them. These are available through the web – where you purchase the equipment with a telecare plan attached to it. This means that as well as the family member being able to locate you, the GPS is monitored remotely by a service who are able to locate you and organise to send help, if needed. The person with dementia does not have to actively use this technology, but it does need to be charged and with them when they go out.
A frequent concern seems to be that the person with dementia will not be able to learn to use the equipment, has never been a phone user or will not be able to operate the equipment. If the person carries a GPS, they do not have to actively use it. The difference in carrying a GPS or not may be that if the person does get lost, they can be quickly and easily located, either by family/friends or, if necessary by the police.
People with dementia want to continue to go out walking and they and family members become aware that getting lost may be a problem. From our discussions with people with dementia and their families so far, we have heard accounts of people with dementia having some ‘lucky escapes’ whereby they have been returned home by members of the public having been in potentially risky circumstances. Carrying a GPS can mean that the person can be found quickly and that risk can be decreased.
If you have any questions about using GPS for safer walking, please contact the team at Gpsstudy@soton.ac.uk
The Office of the Police and Crime Commissioner for Hampshire and the Isle of Wight published their report of Operation Magnet Evaluation in July 2015.
Operation Magnet was set up to provide GPS location technology to people with dementia who go missing, to decrease the possibility of ‘harm or suffering to the individual, friends and family and the cost to public services’. Hampshire Constabulary found that in a six month period, there were a total of 63 instances of a person with dementia going missing who required a response from the Police. GPS location devices with backup support from telecare services enable the person to be located quickly, thereby preventing harm, providing reassurance to family members and carers.
Under Operation Magnet, GPS devices were provided to twenty people ad found that the technology provided benefits for people with dementia to be able to continue going out, reassurance to carers and had cost saving benefits to public services.
he report contains information about the types of devices available and the associated costs. It may help to talk to your Dementia Adviser, Dementia Support Worker, Admiral Nurse or Community psychiatric nurse to see if you may be referred for an assessment in your area.
If you are concerned about getting lost, or a person you know getting lost, then you may want to consider completing the Herbert Protocol. An example of the protocol from West Yorkshire police: misper17
What is the issue?
More recently, people with dementia are participating in society in ways that, for many years, were considered impossible. People with dementia now contribute to and advise on developments in policy, research and practice. In this research, Using Technology for Safer Walking, people with dementia are advisers to the researcher team. In the process of developing the bid for funding, people with dementia contributed to the formulation of the question and were asked about how best to conduct the research. Since starting the project, a group of people with dementia and the family members, Sage, have become advisers who are contributing their knowledge and expertise on the research throughout the rest of the project, until we finish in February 2018.
What is known?
Research that includes people with experience is called participatory methods. There are various ways of facilitating participation. Participation is common in other areas of health and social care research. In some instances, people with experience lead research, and research is conducted by people with experience for people with experience. Participation is also led by academics who do not have direct experience, but ensure that the research is informed and influenced by people who do. This may include partnerships with people with experience to develop research questions, co-produce research by working together at every level of the research. In this instance, people with experience may be trained as researchers and work with the research team to collect data as well as being directly involved in the analysis and dissemination.
In this research, the advisory group works alongside the research team to inform the research design, discuss the data, prioritise the findings according to their experience, and help to disseminate the research. In this project, our advisory group will also help to produce the guidelines for other people with dementia and their families. They will also help us to review the project overall.
Participation is research is relatively new for people with dementia and it is time to develop this way of working to see what is possible. People with dementia have a lot to say about how things could be improved, and whether planned improvements actually meet needs. The value of including people with experience in research is that the research is more ethical and relevant to end users. Without people with experience involved in the research process, it is possible that time and energy are directed in activity that does not meet the needs of the targeted group. What is needed?
Every researcher who is designing research that aims to impact on people with dementia, be it randomised control trials or qualitative work that aims to understand experience, would benefit from including people with dementia to ensure that the research is of benefit and is relevant to end users.
There are groups of people with dementia who are active in informing policy, research and practice in your local area. See the DEEP website at http://dementiavoices.org.uk/
Here, Tula Brannelly discusses the ethics of care and dementia at a conference in London in May 2016, On Everyday Ethics, organised by Julie Wintrup and colleagues from the University of Southampton Faculty of Health Sciences.
For the past few weeks, to let people know about the research project Using Technology for Safer Walking, I have visited many Hampshire memory cafes and other meeting places. I have met with people with dementia, their families, volunteers, Alzheimers Society workers, Admiral Nurses, Dementia Advisers and musicians. I have drank plenty of tea and been enthralled by the reception we have had to this research project so far.
The people I have met have offered thoughts and ideas about how to stay safe out walking, and what is especially important for them, now or in the past. I have been asked pertinent questions about how the GPS system works – the technology is thought of as interesting and useful. People have shared technologies that they use themselves, such as locators and alarms that help them feel safer should they need them.
There has also been discussion about the potential and limitations of technologies, asking the same questions that we are raising through this research – when will they work, for whom and how will people get used to them to know they are useful. What care may be needed from others, such as family members, to know that the technology will function? Are there other concerns that may limit a person from walking independently and what other things may help those too?
People with dementia and their families talked about their love of walking, their previous walking activities such as walking holidays, times they enjoy together, and how their activities may have changed a bit, but they still maintained them for as long as possible. People with dementia who are able to continue walking independently have talked about how it is important to get out on their own, to continue to be independent. There were many stories of near misses, or anxiety about getting lost, but finding their way back eventually, sometimes with help, and sometimes not.
At this stage of sharing information about the project, it has been a pleasure to hear these stories, and to have the project greeted with enthusiasm as it tells me as a researcher that we are on the right track. People with dementia are pleased to hear that research like this is underway to help people in the future. Thanks to everyone I have met, and especially to the Alzheimers Society and Andover Mind organisers of the groups, for the tea and hospitality.
It’s time to start thinking harder about inclusive technologies if more older people are going to get the benefits.
What is the issue?
We have been living through an extended period of change in social and working life and in the technologies that we commonly use. ‘Technology’ in the very broadest sense simply means using knowledge to create tools, techniques or systems to solve problems or make things easier to do. People who are now ‘older’ have seen many specific technologies come, change, and often go. (When did you last see a postal order, or a mangle?) Older people have learned many new technologies and adapted to change all their lives. Yet older people are often seen as incompetent in the use of modern technologies, particularly ICTs, and many may say themselves that this is so. The issue is to find ways to make useful ICTs more available to everyone who could benefit from them: and an important part of that is overcoming prejudice.
What is known about technologies for older people already?
We know some of the reasons why older people are one of the biggest groups in the population to find problems with ICTs. One is that if you passed right through school, college etc. without computers, and you didn’t use ICTs much or at all for most of your working life, then you are already at a disadvantage. Second, with ageing there is the tendency for physical changes such as in vision, hearing, or mobility that many modern gadgets and devices don’t take into account. Also, the pace of change in recent years has seen a constant stream of new devices becoming available: some take off (like smart phones) and some don’t (like mini-disc players). If I’m on a limited income, as many older people are, how do I know what to invest in, and when? Who is going to help me with IT support, upgrading software, etc.? Where do I get reliable information about what might be really useful to me, to solve problems, to make life a bit easier or more interesting?
On the whole people are tending to live longer, but often with health conditions that mean they need some support, and that isn’t always available as and when they need or want it. Technologies are seen as having a role – ideally not to replace people, but to work alongside them to give people the support they need to remain as independent as possible. A whole range of assistive technologies have been developed specifically to deal with physical and cognitive problems – for example fall alarms and motion sensors. Other devices designed for general use have been co-opted as assistive technologies. GPS (global positioning system) is a good example of this, where a general location system can support people living with dementia to get around safely for longer.
Why is this particularly important now? Looking back, it is clear that some technologies originally generally regarded as marginal or even ridiculous have become mainstream. The best example of this is the mobile phone, emerging from a status symbol in the 1980s (yet often a ridiculed one) to the dominant form of telephone connection by the early 21st century. With the emergence of each new way of doing things, there are always early, midstream, and late adopters – and people who never engage. But as technologies become mainstream, people who are excluded from them for whatever reason can be at a real disadvantage, as are adults who can’t read in a society where almost everyone else does.
The emerging world of technologies includes social media that inform and connect people; wearable technologies, such as those for monitoring health and fitness; and robotic assistants for activities of daily living, help around the house, as shopping companions, and lots of other uses. If these are going to work with older people and in their best interests, older people need to be involved in the conversations about developing them.
What is needed?
Older people (and people who support them) need information – accessible, clear and up to date information about technologies that might help to improve their quality of life. Peer and intergenerational support has been shown to be key to the successful adoption of technologies, and to help people to overcome problems at home: for example resolving issues about using different computers, operating system, and applications. Increasingly, older people are being involved in research as users of technology and their involvement is essential to make them work for everybody.