Safer walking technology
Technology for safer walking has the potential to offer benefits to people with dementia and their carers in specific circumstances. But practical and ethical issues, and the concerns of people with dementia and their carers, have yet to be fully addressed.
The Society is keen to point out that the need to walk is often not a problem for the person with dementia. Walking in a safe environment is usually a positive experience and can provide physical and psychological benefits. The motivation to walk is varied and usually represents a response to a need, such as boredom or discomfort.
However, some walking can be problematic, when it has associated risks. Many people with dementia feel compelled to walk about or leave their homes. This is is often called 'wandering' and is estimated to occur in 15 - 60% of people with dementia (Robinson et al., 2007), although prevalence is difficult to assess.
One study found that the risk of getting lost was substantial, with about 40% of people with dementia getting lost outside their home. This sometimes resulted in increased confinement within the home and an increased chance of becoming permanently resident in an institution (McShane et al., 1998). Other associated risks include physical harm, emotional distress, and premature mortality (O'Connor et al., 1990; Ballard et al., 2001; Algase, 2005).
The term wandering should specifically refer to walking when there is an associated risk for an individual and in these cases an intervention may be necessary. Interventions to assist safer walking should be encouraged, rather than to prevent wandering, in order to balance the need to minimise risk with the need for personal freedom (Coltharp et al., 1996; Cohen-Mansfield and Werner, 1998), and because of the benefits of walking.
Assistive technology - which describes a range of devices that have been developed as a result of technological advances to help people live more independent lives - may assist with safer walking. There are two types of technology that may be used.
- An alarm system is used to alert carers to the fact that an individual has moved outside a set boundary, but it cannot locate an individual.
- Tracking devices are used to locate a person at any time or place. This type of system is becoming increasingly available and affordable.
There has been a lot of development of this type of technology in recent years. For further information and advice on devices consult www.atdementia.org.uk
3. Concerns and issues
Safer walking technology has the potential to enable some people with dementia to have greater freedom and independence, and reduce the use of both behavioural drugs and physical restraints. It may also ease the concern and worry that carers may have about the person they care for.
However, the use of technology raises important ethical and practical issues. This briefing discusses these issues and proposes a way forward.
3.1 Ethical concerns:
Civil liberties and privacy
The use of this type of technology is a very contentious and emotive issue. Concerns include the possible loss of liberty and loss of privacy.
'…What's next - microchipping people or tattooing their medical conditions on their forehead?' (Carer, Web Forum)
'The people that were opposed to it [technology], at that event [an Alzheimer's Society seminar on safer walking technology], were doctors and social workers - they opposed it on the basis of 'civil liberties'. That just made me frustrated and angry'. (Person with dementia, CSCI study on restraint of older people).
Technology may increase independence in some ways. A tracking system may allow an individual to walk more freely, and may reduce the need for more restrictive measures such as locked doors or restraint.
However, it also has the potential to decrease autonomy and restrict movement, particularly if an alarm system is in use. It also raises confidentiality and privacy issues. For example, tracking gives the impression of benign surveillance and the loss of privacy that this entails (Hughes et al., 2002).
A balance needs to be struck between the benefits to the individual concerned and the infringement of a person's civil liberties and human rights. Several questions need to be considered when deciding if this technology is appropriate:
- Could technology replace more restrictive measures such as locking doors?
- When does technology stop being an aid to independence and become a restriction on autonomy?
- Would confidentiality and privacy be comprised? Who would have access to information if a person is tracked? Could a person with dementia be followed?
The opinion of people with dementia should be taken into account when considering the use of technology.
'He would bitterly resent anyone keeping tabs on him in this way as he thinks we have taken away enough of his independence already.' (Carer, Web forum)
'There are situations where people like us might benefit. It's happened to me maybe twice in the last few years - I can be walking along on my own and the shutters come down and I just can't remember where I am. I wouldn't mind wearing something like a watch, something like that, in that kind of situation.' (Person with dementia, CSCI study on restraint of older people).
People with dementia have observed that deception is a cause for concern, for example if an electronic device is hidden in clothing or if they are not told of its true purpose. Devices that cannot be removed must also be considered. Do these devices take away a person's right to change their mind? Or is this an essential design feature to ensure that the device cannot be removed in a moment of confusion and perhaps when it is most needed?
This underlies the importance of seeking the consent of people with dementia. It should be acknowledged that technology will not be right for everyone and a person should never be coerced into using it.
Gaining the consent of people with dementia raises many questions about how this should be done and when.
- Is gaining consent only possible in the early/moderate stages?
- What about in the later stages? If this issue has not previously been considered and if consent is not possible, is the use of technology less suitable?
- Or perhaps views on the use of technology in the later stages should be obtained as early as possible and some reference to their wishes made in any advance directives taken out?
Certainly any attempt to determine what is best for an individual who does not have capacity to consent would require careful inquiry and judgement, with reference to relatives or close friends, any designated decision-makers (such as an attorney) and professional carers. The Mental Capacity Act 2005 should inform the process for assessing capacity and gaining consent, and subsequent actions if it is not possible to gain consent.
Stigma and terminology
There is a concern that using technology would increase the stigma attached to people with dementia due to the association with other types of tagging (Welsh et al., 2003; Marr, 1989). Technology, which is often used to 'secure' animals, retail products and prisoners, should not automatically be transferred to people with dementia without full consideration of the ethical issues.
Carers and people with dementia have expressed concern at the word 'tagging' because of its associations.
'I do have a problem with the word tagging. It conjures up images of criminals with great big devices round their legs.' (Carer, Web Forum)
There should be a move away from this term and the Society suggests safer walking technology should be used.
In addition, the products and equipment available to a person with dementia should be as discrete as possible, whilst remaining fit-for-purpose and easy to use. At present, the key determinant of size is the function of the equipment. The further development and improvement of existing devices is necessary, in consultation with people with dementia.
3.2 The care setting
The needs of informal carers
As the symptoms of dementia develop, many carers fear that the person they care for will get lost and become distressed and vulnerable or exposed to danger. It is reasonable and understandable for a carer to want to protect the person with dementia (Baldwin et al., 2005).
'One of the most frightening moments in my caring was one afternoon when I realised that my husband was missing - he was no longer in the house. I searched high and low for him but he wasn't anywhere. And then I found that he'd managed to undo a patio door, and had gone out that way.' (Carer, Making Difficult Decisions, Alzheimer's Society, 2005)
The burden of caring for someone with dementia is often great. Anxiety that someone may get lost can contribute to the decision of carers that they can no longer manage to look after the person at home. It may also mean the carer locks the person into the house, thereby restricting their freedom.
It is important, however, that people with dementia are encouraged to remain independent for as long as possible. Some degree of risk is inevitable and we must ask what level of risk is acceptable in order to maintain the person's quality of life and protect their independence and dignity (Walking about or 'wandering', Alzheimer's Society, 2005). A Commission for Social Care Inspection report highlighted that the key challenge for social care is to shift the balance towards supporting individuals who choose to take informed risks in order to improve the quality of their lives (Commission for Social Care Inspection, 2006).
This raises a dilemma in finding a balance between allowing people with dementia to take risks and attending to the carers own needs by helping them to keep the person with dementia safe. Questions to consider include:
- What level of risk is acceptable to the carer and person with dementia?
- What is the perceived risk and what is the actual risk?
- Is the balance right between enabling the personal choices and maintaining independence of individuals versus the perceived risk and health and safety considerations?
People who live alone
Two-thirds of people with dementia live in the community (Alzheimer’s Society, 2007).From this proportion, one-third live alone in their own homes (Mirando-Costillo, 2010). The Society believes that people with dementia who wish to remain in their own homes should be supported to do so for as long as possible. National governments have expressed a commitment to supporting greater numbers of people to stay in their own homes (Department of Health, 2010; Department of Health, Social Services and Public Safety, 2011; Welsh Assembly Government, 2011).
Safer walking technology can be one way to help people with dementia retain their self-reliance and independence, and remain in their home for longer. It could also help carers monitor the person they are caring for 'remotely' from another location. However, there are many questions that need to be considered around whether this type of technology can support individuals who live alone.
For example, there is a question about whether people with dementia living on their own would be able to use the technology, such as ensuring it is with them at all times. If the technology is to be useful, the support of family, a caregiver or a neighbour would perhaps be required.
Of those living alone,nearly two-thirds (62%) of people with dementia reported feeling lonely and isolation is likely to contribute to further deterioration (Alzheimer's Society, 2013). Would the use of technology increase this isolation or enable freedom and the chance to leave the home?
It is also vital to ensure that the use of technology is not a substitute for the provision of good quality home care services provided by staff who are properly trained in caring for people with dementia (People with dementia living alone, Alzheimer's Society, 2004).
There is also a question about who would respond to a tagging alarm or tracking system? If a call centre is used, is there a service or person to safely recover the individual and how long would a response take? For example, if a carer is to respond, what if the carer is some distance away?
For people living alone, a short or immediate response to an alarm system or a tracking device might be problematic, particularly if there is not a carer in the local area. The risk of getting lost or coming to harm would therefore not be minimised. The response time is particularly crucial for more vulnerable people (for example those with late stage dementia) as they are more likely to be at immediate risk and therefore require an immediate intervention. These issues are further discussed in the section on 'Infrastructure'.
There is also a concern that the use of technology would replace the need for formal care in care homes.
'When one knows how hard-pressed care staff often are and how profit-driven many care homes are, it doesn't take a great leap of the imagination to see that tagging could just diminish into another cheap way of taking less responsibility for individual care.' (Carer, Web Forum)
Is the technology more suitable to support people with dementia living at home, rather than for those in a care home?
'In residential care, people are paid to care and have no responsibilities other than that. They have their hours on duty set for them, as well as breaks. Those living at home receive 24/7 care, usually from one carer. There are no breaks, no going off duty, and household, family and often working responsibilities to be considered.' (Carer, Web Forum)
Walking in acute hospital settings should also be considered. An acute care setting can present both hazards outside the immediate care environment, such as roads, and within the environment, such as items of equipment (Knight, 2006). A common fear of health care workers is that people with dementia may leave the care environment unnoticed and not be able to find their way back (Knight, 2006).
Staff in care homes and hospitals will often express how difficult it is for them to strike a balance between respecting the autonomy of the individual and the duty of care owed to the individual to keep them safe. Could technology be seen as a way of increasing independence for individuals in a care home or hospital?
'I know how much I would have appreciated tagging for my mother, when she continued to run away from day care.' (Carer, Web Forum)
This raises several questions:
- Is the use of technology more suitable in an informal care setting or could technology be seen as a way of increasing independence for individual's in a formal care setting such as a care home or hospital?
- How can we ensure that technology is not just seen as a substitute for comprehensive care?
- What alternatives to technology would be practical and appropriate for a care home or hospital to introduce?
3.3 Practical issues and key requirements
A response infrastructure is a key requirement for the efficient use of tracking technology. Important questions centre around call centres and whether they are an appropriate way of delivering a tracking support service.
If a call centre is used, who will respond to actually intercept the person with dementia? Is it possible to have a dedicated response team? Most services rely on a family member, caregiver or neighbour being able and willing to recover an individual.
The response timeframe also needs to be considered. A tracking device can help to find someone who is lost, but they need to be found before they come to harm. A short response time is therefore vital. This is a particularly important consideration for people who are most vulnerable (for example, people with late stage dementia) and therefore at immediate risk and requiring immediate intervention. Is it always possible for a centre to coordinate a short or immediate response to a tracking system?
In addition, although some devices can detect an individual's location in different geographical areas, it may only be possible to implement agreed recovery procedures in a particular area. There may also be some areas where devices do not work, for example in rural areas with weak mobile phone signals.
People with dementia are particularly concerned about the use of centres for monitoring tracking devices and the issue of confidentiality. For example, who would have access to personal information held centrally? Could a person with dementia be followed? Will call centres be obliged to carry out a Criminal Records Bureau check on employees?
Standards for specialist telecare response services do exist. The Telecare Services Association (TSA) has a Code of Practice that establishes standards for telecare response services, such as the coordination of a quick response in the event of an incident. The TSA lists service providers who cover their local area and who are fully compliant with the Code of Practice. For further information see www.telecare.org.uk
The appropriateness of call centres and alternative infrastructures need to be carefully considered. What about using simpler tracking systems that directly inform a designated carer in the local area, rather than a call centre, for example via a mobile phone? Carers have suggested that they would feel more comfortable taking responsibility for this themselves.
'I personally would want this information going to the designated carer though, not some 24 hour call centre, because I don't have a great deal of confidence in someone else's ability to monitor my loved one.' (Carer, Web Forum)
The need for guidelines
Technology may not be the answer for everybody. People have different needs, abilities and preferences and 'one size does not fit all'. Some people may benefit from additional carer support or services rather than using technology at all (Trent Dementia Services Development Centre, www.atdementia.org.uk).
It is therefore vital that guidelines and protocols are developed to be used as a tool when considering the use of technology. Guidelines should include the requirement to carry out a thorough person-centred assessment.
Questions to think about when developing guidelines and a person-centred assessment:
- Why is the person with dementia walking? Is there a need that is not being met?
- What are the views of everyone involved about the use of technology and the consequences of using it or not using it?
- What is the actual and percieved level of risk?
- Is everyone involved aware of the pros and cons of this technology for the person and their carers?
- Does the situation really call for the use of technology? What are the alternatives?
Guidelines are vital so that however a product is procured (for example self-purchase, social services, NHS), full consideration of the issues and a thorough assessment always takes place.
Limitations of technology
More awareness of the limitations of the technology is needed. There is a concern that technology would give a false sense of security (Lyons & Thomson, 2006). The equipment can only manage risk, it won't remove risk completely and it cannot prevent danger.
For example, a tracking device would not prevent the possibility of someone getting lost and they would not be found instantly, even if a short response time were possible. There would still be an element of risk and a person could therefore still suffer harm before someone could respond. If a timely response was not possible, this risk would increase. The risk is particularly high for more vulnerable people who require an immediate response.
An alarm system also relies on someone being available to prevent an individual leaving an area. This may mean that technology is not a suitable solution for everybody, but requires the availability of a carer.
There is a lack of robust evidence on the effectiveness of safer walking technology and there is an urgent need for high quality research. Two recent systematic reviews of non-pharmacological interventions to reduce wandering, including electronic tagging, highlight the current situation. One evaluated several studies and found a lack of robust evidence to recommend any intervention (Robinson, 2007). Another focused on the domestic setting and found no suitable research to evaluate (Hermans et al., 2007).
If assistive technology does not meet the individual needs and preferences of the person with dementia it may be ineffective or may even cause additional confusion or distress. Technology has the potential to disable a person with dementia as well as enable them. (Trent Dementia Services Development Centre, www.atdementia.org.uk).
This paper has raised practical and ethical considerations that must be addressed and explored ways of taking this forward, such as seeking consent, developing protocols, requiring an assessment and developing an infrastructure. This section sets out the Society's position on the use of safer walking technology.
The Alzheimer's Society believes that technology is particularly suitable for people with dementia in the early and moderate stages, when it can support independence, enable a person to take informed risks and consent can be given.
The use of technology is less likely to be appropriate in the later stages when consent may be more difficult to gain and risk harder for an individual with dementia to assess. People with dementia in the later stages may also be more vulnerable and at more immediate risk, and may require different interventions that provide a more immediate solution.
If considering use in the later stages, every effort should be made to enable people with dementia to participate as much as possible in the decision-making process, even when the person appears to lack capacity. The Mental Capacity Act 2005 must guide the process of assessing capacity to give consent and steps to take where the person lacks capacity to make decisions themselves. The Alzheimer's Society suggests that a person with dementia makes an advance decision on the use of technology for a time in the future when they may lack capacity.
The Society believes that technology is particularly suitable in a domestic care setting to encourage the independence and autonomy of the person with dementia, while supporting the needs of the carer. It is recognised that technology has potential benefit in a formal care setting, although the Society is concerned that technology might be used as a 'quick fix' solution in this setting.
Technology should never be seen as a substitute for comprehensive formal care and it should never replace direct human contact. Technology should only be used in conjunction with good design of the living environment, appropriately trained caregivers and stimulation and activity appropriate to the individual (Lyons & Thomson, 2006).
It must be remembered that the use of technology in any care setting will not remove risk and limitations must be fully acknowledged, with high public awareness of the pros and cons. A proper infrastructure, with full consideration of who will respond in an appropriate timeframe, is essential to ensure the most efficient use of safer walking technology and the society believes that this is a priority requirement.
The Society argues that protocols must be in place to ensure good practice and a regular person-centred assessment should always precede the use of technology. This will ensure that any response is appropriate, tailored to an individual's needs and takes account of changing requirements. An assessment should include:
- An understanding of the causes and purpose of walking.
- Assessment of perceived risk and actual risk.
- A consideration of the particular stage of dementia of an individual and the care setting.
- A consideration of possible alternatives to the technology. For example, the Alzheimer's Society Help Cards, or providing someone to walk with, such as a walking club.
- If technology is appropriate, which type?
5. The Society campaigns for:
- Ensuring that all people with dementia are offered access to appropriate safer walking technology, if, after consultation with the individual, their carer and other relevant people, it is deemed to be in their best interests. A person-centred assessment should always take place to determine the most appropriate technology.
- An appropriate response infrastructure to be developed and in place as a priority.
- High quality research to determine the effectiveness of safer walking technology.
- Further improvements to the design of safer walking technology systems, in consultation with people with dementia.
- Ensuring that the consent of the person with dementia is sought and appropriate legislation guides the process for people who lack the capacity to give consent.
- Guidelines and protocols to ensure good practice should be developed. (Appendix A gives an example of a good practice checklist).
- Ensuring that technology is not seen as a substitute for comprehensive care and support, nor as a way of minimising staff costs or standards of care in residential homes.
6. References and further information
Algase, D. L. (2005). Wandering: clues to effective management. Geriatrics and Aging, 8, 55-9.
Alzhiemer's Society (2004) People with dementia living alone. What's the Society's Position on…?
Alzheimer's Society (2005) Walking about or 'wandering'. Carers' advice sheet.
Alzheimer’s Society (2007). Dementia UK. London: Alzheimer’s Society.
Alzheimer’s Society (2013). Dementia 2013: The hidden voice of loneliness. London: Alzheimer’s Society
Baldwin, C., Hope, T., Hughes, J., Jacoby, R., & Ziebland, S. (2005). Making difficult decisions: the experience of caring for someone with dementia. The Alzheimer's Society.
Ballard, C. G., Mohan, R. N. C., Bannister, C., Handy, S., & Patel, A. (1991). Wandering in dementia sufferers. International Journal of Geriatric Psychiatry, 6, 611-614.
Cohen-Mansfield, J., & Werner, P. (1998). The effects of an enhanced environment on nursing home residents who pace. Gerontologist, 38, 199-208.
Coltharp, W. J., Richie, M. F., & Kaas, M. J. (1996). Wandering. Journal of Gerontological Nursing, 22, 5-10.
Commission for Social Care Inspection (2006) Making choices: taking risks. A discussion paper.
Department of Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice. London: The Stationery Office.
Department of Health (2009). Living well with dementia: A national dementia strategy for England. London: Department of Health.
Department of Health, Social Services and Public Safety (2011). Improving dementia services in Northern Ireland: a regional strategy. Belfast: DHSSPS.
Hermans, D. G., Htay, U. Hla., & McShane, R. (2007). Non-pharmacological interventions for wandering of people with dementia in the domestic setting. Cochrane Database of Systematic Reviews 2007, Issue 1. Art. No.: CD005994. DOI: 10.1002/14651858. CD005994.pub2.
Hughes, J. C. & Louw, S. J. (2002) Electronic tagging of people with dementia who wander. British Medical Journal, 325, 847-848.
Knight, R. (2006) Walking in acute hospital settings. In: Marshall, M. and Allan, K. (eds.) (2006) Dementia: walking not wandering. Fresh approaches to understanding and practice. London: Hawker publications.
Lyons, D. & Thomson, A. (2006) Rights, risk and restraint: guidance for good practice. In: Marshall, M. and Allan, K. (eds.) (2006) Dementia: walking not wandering. Fresh approaches to understanding and practice. London: Hawker publications.
Marr, J. (1989). Electronic tagging. Nursing Standards, 4, 54.
McShane, R., Gedling, K., Keene, J., Fairburn, C., Jacoby, R. & Hope, T. (1998). Getting lost in dementia. A longitudinal study of a behavioural symptom. International Psychogeriatrics, 10, 253-260.
Mental Welfare Commission for Scotland (2005). Safe to wander? Principles and guidance on good practice in caring fro residents with dementia and related disorders where consideration is being given to the use of wandering technologies in care homes and hospitals.
Mirando-Costillo et al (2010). People with dementia living alone: what are their needs and what kind of support are they receiving? International Psychogeriatics, 22(4) 607-617.
O'Connor, D. W., Pollitt, P. A., Roth, M., Brook, C. P., & Reiss, B. B. (1990). Problems reported by relatives in a community study of dementia. The British Journal of Psychiatry, 156, 835-841.
Robinson, L., Hutchings, D., Dickinson, H.O et al. (2007). Effectiveness and acceptibility of non-pharmacologica interventions to reduce wandering in dementia: a systematic review. International Journal of Geriatric Psychiatry, 22, 9-22.
Telecare Services Association www.telecare.org.uk. The representative body for the telecare industry within the UK.
Trent Dementia Services Development Centre. www.atdementia.org.uk. A website by charity Trent Dementia Services Development Centre to raise awareness of how assistive technologies can help people with dementia remain in their own homes. Funded by the Department of Health the website aims to show professionals, families and people with early dementia what is available, how to obtain the devices and how to use them.
Welsh Assembly Government (2011). National dementia vision for Wales. Cardiff: Welsh Government.
Welsh, S., Hassiotis, A., O'Mahoney, G., & Deahl, M. (2003). Big brother is watching you - the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties. Aging & Mental Health, 7, 372-375.
Appendix A: The Mental Welfare Commission for Scotland (2005) good practice checklist
1. Consider causes of behaviour.
2. Assess the risk.
3. Consider alternatives to wandering technology.
4. Identify if wandering technology is available and appropriate.
5. Ascertain views of individual, relatives, care team, Care Commission, etc.
6. Consider ethical implications, the benefits and disadvantages of the system.
7. Consider legal implications for individual concerned, particularly in relation to possible use of Adults with Incapacity (Scotland) Act 2000.
8. Formulate individual care plan.
9. Ensure all staff and involved relatives understand care plan.
10. Monitor implementation of care plan.
11. Review care plan frequently.
Last updated: July 2013 by Geraldine Green.