Drivers of ‘challenging behaviours’ in Aged Residential Care Ruth Thomas MSc Dementia, RMN, MBA Midland DHBs’ Regional Dementia Nurse Advisor

The solution is very simple ……. The difficulty is doing it

The solution is very simple ……. The difficulty is doing it

Staging disease severity, Neurology Mar 2005, 60 (6) 1005-1011 We have to take the impact on people with dementia from having actively progressive diseases of the brain into account – if we don’t you will get challenging behaviours such as challenging behaviours Staging disease severity, Neurology Mar 2005, 60 (6) 1005-1011

THE STORY OF THE TREE SWING This is what society, family /whanau, other residents without dementia said they want and expect This is what we said we would deliver This is what is realistic to achieve if residents do have dementia This is what we communicated to society, family /whanau and others about the gap in expectations and what realistic expectations are This is what the actual customer (the resident with dementia) wants

cannot change how they perceive the world, Now I’m not trying to be confrontational I am simply getting it out there that the drivers of ‘challenging behaviours’ of residents with dementia in ARC are overwhelmingly rooted in how care is delivered. Also that residents with dementia do have compromised brains and will therefore do things differently. There is very little that they can change, they cannot change how they perceive the world, they cannot change the fact that they have unrelenting memory loss, they cannot change the fact that their ability to comprehend things as we do is diminishing. There is little that they can change. There is however a huge amount that we can change.

Drivers of challenging behaviours = disabling environments Physical environment Social environment/care culture Physical health A disabling environment is one that prevents an individual from being able to do things freely and independently, resulting in feelings of worthlessness, frustration, hopelessness, etc. An enabling environment is one that has a care approach and building that works well for the individual and allows easy access for everyday living. It is one that provides and encourages independent functioning in everything the resident does. It has a focus on ordinary/domestic/every day tasks and crucially must allow residents to proceed at their own pace and to their own standards.

Concept Mapping Concept maps are tools using visual representations of ideas and facts used for assessing, care planning and evaluating care interventions (in this case regarding behaviours of concern). Constructing a map helps us to consider what might be triggering the resident’s actions and therefore allows us to come to new understanding of the resident as well as helping us to identify, and then alter, the things that are in our power to alter.

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Told they’ve done ‘it wrong’ Being rushed / hurried along Social environment

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Delirium Depression Physical pain Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Use dementia specific tools to assess for, and then treat. Consider the impact of having these on physical functioning and cognitive, feelings of self-worth, frustrations, of being a nuisance, etc. ……… then consider how the person will express these …… ‘challenging behaviours’ Doors to bedrooms and garden locked Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Consider the impact of being sedated and/or not receiving timely pain relief on physical and cognitive functioning, ……… then consider how the person will express these …… ‘challenging behaviours’ Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Sedation Pain relief Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

U C H O Help Observe Understand Communicate https://www.youtube.com/watch?v=4kEvhkzH27w

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Consider the impact of being rushed/hurried along, having everything done for you (even though given a little time and the right cues you could do it yourself), being made to feel useless, stupid, etc. ……… then consider how the person will express these …… ‘challenging behaviours’ Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Doing things that the person can do for them self Unrealistic expectations Starting too far up the triangle Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Starting too far up the triangle Doing ‘for’ not ‘with’ Tasks, activities or ADLs Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Make the most of a person’s skills & create excess disability Fully Assist Physical assistance Modelling required action Directive Prompt Non-Directive Prompt Full physical assistance Minor/small Demonstrate what they need to do Use verbal prompts Use the environment to prompt the person Prompts and guidance- graded interventions REMEMBER: Make the most of a person’s skills & abilities – do not create excess disability

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Consider the impact of knowing that ‘getting the jobs done’ is more important than YOU, and being stopped from doing things that would increase your quality of life because there’s a risk attached to it ……… then consider how the person will express these feelings …… ‘challenging behaviours’ Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Medication Task completion more important than QoL No Person Centred Care Risk averse Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Physical environment Doors to bedrooms and garden locked Starting too far up the triangle Doing ‘for’ not ‘with’ Tasks, activities or ADLs Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Consider how the person will feel if they are unable to find their way around / understand signage / are overwhelmed by the noise levels / can’t get to their clothes because the wardrobe is locked ……… then consider how the person will express their feelings …… ‘challenging behaviours’ Delirium Do we do it ‘their way’ Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Personality, Life story and identity Dementia- friendly signage No ‘clues’ to what the room is for Pain relief Sedation Heat, cold, noise, light levels, etc. Dementia friendly signage Medication Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Doors to bedrooms and garden locked No colour camouflaging or contrasting being used Starting too far up the triangle Doing ‘for’ not ‘with’ Doors to bedroom, wardrobe and garden locked Physical environment Tasks, activities or ADLs Told they’ve done ‘it wrong’ Social environment Being rushed / hurried along

Neurological impairment Physical & psychological health and needs Which parts of the brain are working Family /whanau involvement Depression Delirium I’ve told you that a thousand times already - stop being naughty (anybody would think you had problems with your memory) Do we do it ‘their way’ Stop yelling and hitting out Hilda, anybody would think you’re in pain (she can’t be in pain otherwise she’d tell us) Which parts of the brain are not working Neurological impairment Physical & psychological health and needs Being made to feel useless Do we use their words Pain, limited movement Do staff know the person Can’t identify my bedroom Hilda’s refusing to join in with the activities (apparently she was a bit of a loner, but that’s no reason to not do the scheduled activities) No you can’t have your pain relief yet Hilda, the care staff need to get you up and dressed first Personality, Life story and identity Dementia- friendly signage Medication No ‘clues’ to what the room is for Pain relief Sedation Heat, cold, noise, light levels, etc. No colour camouflaging or contrasting Unrealistic Doors to bedrooms and garden locked Here. Let me do that for you Hilda (you’re so slow) No Hilda you’re not allowed to do that (you know she treats this place like it’s her home) Tasks, activities or ADLs Starting too far up the triangle Doing ‘for’ not ‘with’ Hilda’s weed in the flower pot again (you’d think she couldn’t see the toilet or something) Told they’ve done ‘it wrong’ Social environment Physical environment Being rushed / hurried along

Instructions on a notice board in the office of a dementia care unit … “All female residents must wear a bra”. “All male residents must be shaved every day”.

we should offer interventions … So … “… many of the behaviours identified as challenging are symptoms of human distress, disorientation and misperception.” (p. 3) and, we should offer interventions … “that aim to lessen the distress and harm caused by these difficulties, and increase the quality of life of those living with dementia …” (p. 4). Brechin et al (2013)

Ruth Thomas MSc Dementia, RMN, MBA Midland DHBs’ Regional Dementia Nurse Advisor ruth.thomas@bopdhb.govt.nz