All Those Who Wander are Not Lost: Walking with Purpose in Extra Care, Retirement and Domestic Housing

In July, Dr Julie Barrett, research coordinator for the Housing and Dementia Research Consortium (HDRC), presented at the British Society for Gerontology conference in Liverpool. The presentation was about the work that she had been doing for Housing 21 on walking with purpose in extra care, retirement and domestic housing settings. This blog provides an overview of the research and its findings.

What is walking with purpose?

When people living with dementia have a need to walk it is often seen as a ‘problem’. The terminology that is widely used reflects this viewpoint, particularly when it is described as ‘wandering’ or a ‘behavioural problem’.

Many different terms are used to refer to walking with purpose including: wandering; walking; walking about; wander-walking; roaming; ambulation; movement; getting lost events; aberrant motor behaviour; exit seeking; elopement (walking away from a safe residence) and unescorted exiting. It is often classed with other behaviours, also referred to by many different terms such as ‘challenging behaviours’, ‘behaviours that challenge’, ‘behaviours that concern’, behavioural disturbances’, ‘behavioural symptoms’, ‘disturbed/disturbing behaviours’, ‘distressed behaviours’, ‘aberrant motor behaviours’ or ‘difficult situations’. A standard definition is lacking and there is no clear consensus about what exactly is being described.

While ‘wandering’ has become a label with negative overtones in the context of dementia care, it is now considered by some researchers and health professionals as an activity, often a pleasurable one, that all of us engage in at some point in our lives. It is also apparent that ‘wandering’ suggests aimlessness, whereas in fact there is often a purpose or aim behind this activity in the context where the term is used. In recognition of this, we have adopted the term ‘walking with purpose’ while also acknowledging that this includes ‘wandering’ as a normal and valuable human activity in its own right.

What was the research trying to find out?

Managing walking with purpose in long-term care settings can be a challenge, especially for extra care and retirement housing providers, who provide independent living for residents and thereby face particular challenges in understanding and responding to residents living with dementia who engage in walking with purpose.

Housing 21 asked the HDRC to conduct research to help them better understand the issues relating to walking with purpose in their extra care and retirement housing schemes. The principle aim of the study was to explore and understand walking with purpose among people living with dementia in extra care and retirement housing settings, along with the perceptions and responses of staff and family carers, in order to develop good practice guidelines. We also explored walking with purpose in domestic (or mainstream/general needs) housing for comparison purposes.

What did we do?

Three key activities were carried out for this study:

• Literature review – to explore the existing evidence relating to walking with purpose among people living with dementia, specifically in long-term accommodation and care settings but also in mainstream housing.
• Online survey – targeted at the managers of extra care and retirement housing schemes in the UK and used to gather data on the prevalence, awareness, perceptions, understanding, responses, policies and procedures and support with respect to walking with purpose in these settings.
• Case studies – to explore in greater depth the issues relating to walking with purpose in Housing 21 extra care and retirement housing schemes. Interviews were conducted with key staff and family members at the case study sites, focusing on specific residents living with dementia who engaged in walking with purpose. Interviews were also conducted with the informal/family carers of people living with dementia in mainstream housing in order to get a broader picture of the challenges and how this affects general needs housing.

What were the findings?

Impact on staff

The survey and case studies showed that, although residents who walk with purpose constitute a minority of people living in retirement and extra care housing schemes, managing walking with purpose can be a challenge for management and staff and can occupy a disproportionate amount of their time. The severity of this challenge and the impact on staff time was felt to be greater for extra care housing than for retirement housing. Similarly, the effectiveness of attempts to support walking with purpose was more varied for extra care than for retirement housing.

However, the case studies found that, depending on the frequency and nature of walking with purpose, addressing this behaviour can be impact negatively on both retirement and extra care housing managers in terms of time, effort and emotional wellbeing. While all the survey respondents felt that managing walking with purpose was only a moderate or slight contributor to staff stress, the managers interviewed in the case studies told a different story with many becoming stressed and anxious, particularly when residents leave or try to leave the scheme. The case studies also revealed that addressing walking with purpose that takes place only within a scheme can also be time consuming if the resident is doing so regularly, and can be a source of stress if that resident has a tendency to fall.

“It’s trying, it’s hard, because, I mean, last week was absolutely horrendous with this gentleman who we’re talking about.” (Retirement scheme manager)

“It was awful, because she’s got nobody else, you feel…I don’t know, I was really sick, I really was, I never slept.” (Extra care scheme manager)

“Just the worry of her falling, we want to keep her safe obviously, and we want to keep her here as well, we don’t want her to have to go off to a care home. And that’s the family’s wishes as well.” (Extra care scheme manager)

Distraction and redirection

The preferred method of addressing walking with purpose in the case studies was distraction or redirection. Getting to know the resident by understanding their life story, likes and dislikes and their reasons for walking with purpose were recommended to assist with distraction or redirection. Other strategies adopted were to talk to the resident to try to explore their motivations, try to accommodate their wishes and accompany the resident on a walk outside.

“We try and make her a cup of coffee, sit her down and put her favourite programmes on the telly.” (Extra care scheme manager)

“We distract her with… She loves the royal family so if we’ve got books upstairs with the royal family we just show her pictures of that or show her, her photos and get her talk about her photos … when she was younger and her children when they were babies. There’re so many different things we can distract her with.” (Extra care scheme manager)

Similarly, in the survey, understanding why the resident is walking, distraction or redirection, and walking with the resident were the most common and effective methods used to address walking with purpose. Getting to know the resident was also recommended by the survey respondents in order to discover and provide the most effective response to an individual’s walking with purpose.

However, using distraction/redirection could be viewed as staff trying to prevent a resident from leaving the scheme and indicative of a risk averse care culture that perceives walking with purpose as a problem. This is not consistent with the ethos of extra care and retirement housing living, which purport to encourage independence and choice.

Training

Staff training in understanding and addressing walking with purpose appears to be key to effectiveness in supporting safe walking with purpose. Both the survey respondents and the managers interviewed in the case studies mentioned greater staff training in how to support people whom walk with purpose as a desired change. This is unsurprising, bearing in mind more than half of the extra care and retirement housing survey respondents stated that staff at their schemes had not received any training on understanding and addressing walking with purpose.

Policies

In addition, findings indicated that not all extra care and retirement housing schemes are set up to consider or cater for people living with dementia who walk with purpose. This omission is more evident in retirement housing than extra care housing. A large proportion of respondents were also unaware of whether their scheme had any policies, procedures or guidelines for supporting safe walking with purpose, which could mean that they did not have any or that they did but this had not been communicated to them by the organisation. A lack of such policies or procedures was also evident at the case study schemes.

Environment

The design of the physical environment plays an important role in supporting the wayfinding abilities of people living with dementia and there are numerous design features available to specialist accommodation settings to support safer walking with purpose. In both the survey and the case studies, various design features were used by the schemes with extra care housing schemes more likely to have a greater variety of features than retirement housing schemes. One notable finding from the survey is that four of the extra care housing schemes and five of the retirement housing schemes used black mats in front of exit doors. One of the case study extra care housing schemes and two of the retirement housing schemes also used these. Black mats are perceived as a hole in the floor by some people living with dementia and therefore deters them from leaving the building. This approach or course raises serious ethical issues.

Assistive technology

There are now many assistive technology devices available to ensure safer walking with purpose. Among other things, assistive technology can enable carers to know when a person has left their room, bed or chair, track their location both within and outside the scheme, and help find the person should they become lost. The survey responses and case studies suggested that little use of such technology may be due to lack of awareness and high costs.

What are the recommendations?

• Improve awareness and understanding
  • Get to know the resident and find out their motivations and reasons for walking; try to accommodate their wishes and determine what will work to effectively support their walking with purpose and enable them to do so in a safe manner
  • Train staff in managing walking with purpose and carry out continuous risk assessments for residents who walk with purpose.
  • Ensure other residents have an awareness and understanding of dementia and walking with purpose to reduce stigma and misunderstanding.
• Work with others
  • Develop and maintain good communication and relationships with the family and other stakeholders e.g. GP, mental health team, Local Authority
  • Foster connections and good relationships with the local community and businesses to develop a local network of “eyes”
• Know what to do in different situations
  • Inform the correct agencies, e.g. LA adult services and the Police, when a vulnerable person has left the scheme
  • Use the Herbert protocol for residents who are at risk of leaving/getting lost outside the scheme
• Investigate technological and environmental options
  • Consider use of assistive technology devices such as contact ID wrist bands, door sensors, speaking door sensors, GPS trackers and alarm mats
  • More needs to be done to ensure dementia friendly design of the physical environment that is supportive of safe walking with purpose in extra care and, in particular, retirement housing

What did Housing 21 do?

• Provide support to staff to challenge perception that it is a problem
• Discourage a risk adverse culture – encourage positive risk taking
• Equip staff to be able to support walking with purpose
• Dementia Advocates
• Walking with purpose week to raise awareness, launch training, share and encourage use of resources, undertake design audits, gather more case studies, Dementia Friends initiative, Court Managers to engage with dementia-friendly communities, and embed into the culture of care

For further information contact Julie Barrett.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow