Engaging people with dementia in meaningful activities and increasing family education and support can make a difference when addressing risky wandering, write Cheryl Alexander and Geoff Jones.
The Wayfinding Project focuses on people with dementia living at home who wander, have become lost or who are frequently restless or ‘busy’. The team at Southern Cross Care WA in Perth investigated whether non-drug interventions could improve the quality of life for this group and their family members.
This is important, as risky walking by people living at home can lead to serious injury or the person becoming lost. Family members may respond with ongoing anxiety and try to provide 24-hour supervision. To date, most reported work has been within residential facilities.
The team worked with 12 people living with dementia and their family members. The main outcome measures were very brief, frequently-rated happiness, quality of life and carer burden scales. We used questionnaires to measure quality of life, personal wellbeing and wandering behaviour and interviews before and after intervention to support any changes observed on the main outcome measures.
Interventions were negotiated with the person living with dementia, where possible, and the family member. The interventions were guided by the strategies the particular participant had tried in the past or were currently using; any identified risks to the person living with dementia and their family members, and what they thought would be helpful in their circumstances. Interventions lasted for 11 weeks for each participant. We identified five likely intervention categories from the literature:
- Improving crisis management to reduce risk when risky wandering occurs
- Reducing the likelihood of wandering or going missing
- Increasing family resilience
- Reducing the impact of other adverse outcomes such as weight loss, fatigue and loss of sleep
- Encouraging life-enhancing alternative behaviours to wandering.
Options in the first category, crisis management, included emergency ID for the person living with dementia to wear in the form of a pendant, bracelet or key ring. Emergency contact details were engraved on the back and usually included the person’s name and contact details for family members. This was the most popular intervention with seven of the 12 families choosing to use one.
Family members reported feeling reassured that anyone finding the person could contact the family. We had expected that other equipment such as a personal GPS tracking device and sensor-based in-home monitoring system would assist in crisis management. In practice, they gave the family member information regarding the movements of the person living with dementia. Typically there was less risky activity observed than expected and this was reassuring for families.
The second category – reducing the likelihood of wandering or going missing – involved activities such as training the person living with dementia to safely use alternative routes when walking.
Increasing family resilience involved a variety of strategies. Where it was needed, we arranged for a dementia consultant to meet with family members and talk through issues of concern not related to the wandering, for example continence issues. We also used a modified version of a carer education and support manual to build resilience. The manual covered topics such as wellbeing and stress; unhelpful thoughts; communication styles; pleasant events and mood; and relaxation strategies. Family members reported that the interventions helped them to change the way they approached situations for the better.
Reducing the impact of other adverse outcomes included helping family members to take practical steps to ensure their loved one was drinking enough fluids. This was of particular concern where the person living with dementia was very restless.
Strategies in the final intervention category that encouraged life-enhancing alternative behaviours were sometimes prompted by the pleasant events section in the carers’ education manual. We also developed more meaningful activities for the person living with dementia, often based on previous hobbies and interests. Where required, we adapted these to better match the person’s abilities.
The project found that there are often other family priorities in addition to wandering. To address this we provided appropriate information and made referrals where required.
Participants living with dementia frequently did not identify their activity as concerning and viewed interventions aimed at reducing the risk of getting lost as unnecessary. This meant that in practice we worked mainly with family members and less with directly modifying the wandering than we had anticipated. The interventions focused mostly on supporting the family members to better cope with the wandering.
Some interviews with family members suggested a clear improvement in how they coped and a reduction in their worry. While the before and after questionnaires supported the positive changes noted in the interviews, these improvements were not picked up by the brief, frequently-rated wellbeing scales used. Overall, the project’s results suggest that it is possible to achieve change in the quality of life of the family members and the person living with dementia.
Cheryl Alexander is a project officer with Southern Cross Care WA and Geoff Jones is a clinical psychologist. The Wayfinding Project was funded through WA HACC.
This article appears in the current edition of Community Care Review magazine.
To subscribe to CCR please visit http://www.australianageingagenda.com.au/subscribe-to-ccr/