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
The protocol asks for information that the police would need to find someone. This includes a recent photograph, and any known places the person is likely to be trying to get to.
As the Police are often called to find people who reside in care homes, it would be beneficial for them to complete the protocol too.
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.
Why now?
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.
Other information:
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?
Why now?
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.
