NEW APPROACHES TO MANAGING WANDERING. Professor Elizabeth Beattie Dr Margie MacAndrew

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NEW APPROACHES TO MANAGING WANDERING Professor Elizabeth Beattie Dr Margie MacAndrew

Overview Review evidence related to outcomes of dementia related wandering. Look at results of two behavioural interventions trialled to reduce risky aspects of wandering in Residential Aged Care (RAC). Discuss approaches that future research should consider.

What are we talking about? An objective, empirically-founded definition to aid universal understanding of the behaviour: syndrome of dementia-related locomotion behavior having a frequent, repetitive, temporally-disordered and/or spatially-disoriented nature that is manifested in lapping, random, and/or pacing patterns, some of which are associated with eloping, eloping attempts, or getting lost unless accompanied. Algase DL, Moore D Helen, Vandeweerd C, Gavin-Dreschnack D and the IWC (2007) Mapping the maze of terms and definitions in dementia-related wandering. (2007) Aging and Mental Health. 11 (6):686-98.

An explanatory model of risky locomotion ( derived from the Need-Driven Behaviour Model, Algase et al 1996) Contributing Factors Stable - Demographics (age*, race, gender*, education) -Predisposing factors (personality*, response to stress*) ApoE status Dynamic - Enabling Mobility*, function*, health status*, medications* - Neurocognitive * (attention, cognition, memory, language skills, executive functioning, wayfinding capacity

Type and Intensity of Wandering Type -Spatial disorientation -Repetitive/routinised walking - night wandering Intensity -distance walked in a day -frequency and duration of each episode -persistence over time Algase, D.L., Beattie, E.R., & Therrien B (2001) Impact of cognitive impairment on wandering behavior. Western Journal of Nursing Research 23(3), 283-295.

Wandering Type and Intensity ADVERSE OUTCOMES Immediate Fatigue * Food intake* Falling and injuries* Unescorted exits* Exiting alone* Cumulative Weight loss (in excess of the disease alone) * Relocation* Ending home care* Becoming lost* Death*

Risk Model Contributing Factors Stable Factors Demographics: (age, gender, education & race) Predisposing Factors (personality, response to stress, ApoE status) Dynamic Factors Enabling factors: (Mobility, function, health status, medications) Neuro-cognitive factors: (Attention, cognition, memory, language/verbal skills, executive functioning) Immediate Adverse Outcomes for Wanderers Meal time impulsivity Inadequate food intake Falls, fractures and injuries Eloping behaviours (exit attempts, unescorted exits, and getting lost) Type and Intensity of Wandering Type of wandering: Spatial disorientation Repetitive/routinised walking Night time wandering Intensity of wandering: Distance walked in a day Frequency and duration of each episode Persistence over time Cumulative Adverse Outcomes for Wanderers Weight loss Relocation End of Home Care Death Algase, D.L., Beattie, E., & Son, G.R. (2006) A model of risky wandering. In Nelson & Algase (Eds) Evidence-based Protocols for Wandering Behaviour (2006), Springer:NY.

Wandering Risk estimate Interpersonal Technological Policy Excessive wandering; Wandering disrupts necessary Low Engagement; diversion; collusion, behaviour modification Sensory enhancement Risk screening assessment; behaviour logs; scheduled location checks Losing one s way indoors Lowmedium Verbal re-direction; train to use same route every time. Environmental design and cueing Risk screening assessment; behaviour logs; scheduled location checks Trespassing into off-limits or hazardous areas or beyond mastery level; night wandering; stating intent to leave; preparing to leave Medium Verbal redirection; behavioural modification; structured activity programs; wandering registry; intensified supervision. Alert/alarm systems; barricades, locks/subjective exit barriers, e.g. mirror, mural, door and floor camouflage, environmental design & cueing; surveillance As above with increased frquency of location checks

Wandering Risk estimate Interpersonal Technological Policy Exit door lingering and testing Medium to high Redirect using verbal and nonverbal cueing & diversion; conceal cues for leaving, e.g. keys; intensified supervision; alert responsible parties to heightened risk Subjective exit barriers Lost residents plans; door alarms, drills/checks; incident reports; medication review Seeking means or opportunity to exit Medium to high Verbal redirection; behavioural modification; structured activity programs; wandering registry; intensified supervision. As above As above Un-approved exiting High Promptly respond to alert/alarms Contain, monitor As above As above Eloping; losing one s way beyond care; getting lost High, critical Track, return. Promptly recognise absence, rapidly locate and return to supervised care, assess health status Wandering registry, local or state police; search and recovery mission GPS

What can we do better now? Wandering history on admission/ at home Take reports of increased locomotor behaviour seriously Get a good snapshot of the behaviour of concern Excessive walking? Agitation? Fatigue? Intrusion? Peak period assessment Behavioural log RAWS (NH &C versions) Monitor capacity to walk safely- physical and cognitive (mastery of environment and wayfinding). Provide appropriate physical supports for environmental protection

A Tool to Measure Wandering Behaviour The Revised Algase Wandering Scale (RAWS) (Nursing Home & Community versions) A 28-item questionnaire, based on three dimensions of wandering Persistent walking Spatial disorientation Eloping Differentiates between those who do not wander, those with occasional behaviour, those who wander but without issues and those whose behavior involves moderate to high risk (scale 1-4) Validated in an Australian community sample Algase, DL, Beattie, ER, Bogue, E, & Yao, L. (2001). Algase Wandering Scale: Initial psychometrics of a new caregiver reporting tool. American Journal of Alzheimer s Disease and Other Dementias, 16(3), 141-152. Algase, D. L., Beattie, E. R. A., Song, J., Milke, D., Duffield, C. & Cowan, B. (2004). Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample. Aging & Mental Health, 8(2), 133-142. Marcus, J., Cellar, J., Ansari, F. & Bliwise, D. (2007) Utility of the AWS in an outpatient AD sample. International Journal of Geriatric Psychiatry, 22(8):801-5.

Two approaches to reducing risky wandering Aim: To trial the feasibility of two behavioural interventions implemented with people with severe dementia who wander in RAC. Target of the intervention: frequent/repetitive walking & boundary transgression Protocol development Consulted with potential end user Exercise based activity & Music Considered theoretical frameworks Wandering is an expression of unmet needs. Eliminate / modify underlying cause Make the behaviour safer Considered the evidence No previous RCTs specific to wandering BUT Walking programs had the strongest evidence AND Listening to preferred music effective for agitation

Intervention protocols Supervised walking program Daily 30 minute walk with a trained RA or care staff 30 minutes before peak activity periods Outside care facility 3 week trial Listening to preferred music Daily 20 minute session with trained RA Listened to selection of preferred music 30 minutes before peak activity (condition 1) OR at random times (condition 2). 3 week trial

Outcome measures Pre, during and post measures Protocol fidelity length of session, reason for deviations from protocol/no intervention. IRR 10% - check protocol fidelity and types of communication used Characteristics of wandering: Direct observation 2 x 2 hours per week per participant Locomoting / non locomoting frequency & duration Pattern pacing, lapping, random, direct Boundary transgression entry into out of bounds/hazardous areas 24/7 step count Actigraph Activity monitors Trialled Noldus Pocket Observer Immediate pleasure (music intervention) Staff/family members perception (interviews) Others: wandering status agitation, sleep, falls, weight

Participants Supervised Walking 2 participating facilities 60 bed dementia specific locked unit 120 bed mixed frail aged ad people with dementia (not locked) 7 residents with severe dementia who were known to wander and tolerate Actigraph Preferred Music 2 participating facilities 60 bed dementia specific locked unit condition 1 94 beds 16 beds in locked dementia specific unit condition 2 10 residents with severe dementia who were known to wander and enjoyed listening to music

What did we find? Protocol fidelity Supervised Walking Program 80% of planned walks were completed Reasons for not starting/completing walk: participant refused (n=5), participant fatigue (n=4), self-reported Illness (n=3), staff reported participant illness (n=3), participant asleep (n=3), staff unavailable to conduct walk (n=1). Reasons for not taking planned route: road work, participant choice, weather Listening to Preferred Music 61% of scheduled sessions were initiated; only 60% of sessions initiated went for full 20 minutes Reasons for not commencing involved in other activity, planning another activity, absent from facility Reasons sessions ending early participant walked away from speaker or removed headphones 1 participant refused all sessions

Average Steps per Day Average Daily Steps Effect of interventions on wandering No significant findings BUT characteristics of wandering were not exacerbated during intervention weeks 12000 10000 8000 6000 4000 2000 0 1 2 3 4 5 6 7 12000 10000 8000 6000 4000 2000 0 Mean Supervised Walking Listening to Preferred Music

Impact of music on mood Participants were asked Did you enjoy listening to music at the end of each session: o o o o 51% said YES 33% did not respond 13% said NO or were neutral 3% response not recorded More positive mood observed during music sessions Observed mood during interventions

Staff perceptions of walking program Improved participants mood and engagement with others. Staff found it was an enjoyable activity that helped build rapport with residents. Walking outside the facility was an important part of the program. Participants seemed to enjoy going for a walk after some initial anxiety, were very enthusiastic. Didn t notice change in amount of walking but seemed to walk more in common spaces more social. BUT worried about interfering with staff routine and taking staff from care duties. Should use volunteers or activity officers and consider group walks for socialisation

General observations Participants initially had trouble adjusting to being outside Some had not been outside facility for many years Uneven ground, grass and breeze No participant tried to run away. The participants were very aware of the new surroundings and noises. Had trouble sticking to strict time schedule as participants keen to leave. Some residents became very fatigued had low step counts but were elopement risk. Suited participants but not all low step count.

Staff/family perceptions of music program Participants enjoyed listening to music. Positive changes in the person s mood and behaviour were observed. The program caused minimal impact on the facility and it should continue BUT no consensus on who should implement the program. Suggested using the music at set times e.g. after lunch or dinner.

General observations Very hard to get some residents to come to a designated area to listen to music sometimes listened in areas with many distractions. Family may not know current likes and dislikes. Other residents entering bedrooms interrupted sessions. Expecting residents to sit for 20 minutes may not have been realistic. Suited some participants but not all.

Proposed modifications to the protocol Supervised Walking Program Groups of residents walking in groups. Morning or afternoon sessions. Continue to walk outside the facility. Use staff / volunteers provided by facility to lead walks. Need to exclude residents with low step counts. Listening to Music Check music selection with the person with dementia if possible. Need to be able to tolerate headphones. Involve facility staff more. Reduce the length of the intervention to 10 minutes. Consider adding a visual component e.g. video clips of artist or related /meaningful images.

Where to next? Revision of the RAWS Development of a tool to support effective and safe return Further refinement and testing of promising non-pharm. interventions focused on risk high risk characteristics