Understanding

The Girl with the Blue Stethoscope has posed an interesting comment.

"What kind of proportion of your work is made up of patients with dementia and related conditions?"
Probably about a third to a half of my work is dementia related.


"What can you do for them if (as in this case) medications won't help?"
Ah, now that's what is of interest.

My starting point would be that lots can be done by a great many people. What can I do, well that's a much more modest thing.

As a doctor, when medication won't help, and I can't change the underlying process at all, my role is mostly explanation and psychoeducation, with a touch of patient and carer support thrown in too. The biggest thing I do, typically, is to involve the right colleagues.

When someone has dementia they need advice on a lot of things (initial assessment letters often run to over a dozen points for various folk to act on). After this, input is provided according to need.

My stab at the simple answer of what's done could be that, "appropriate patient centred health care and social welfare is provided with dignity and respect."

The complicated answer is that we need to understand the person, we need to understand them very well indeed.

It's easy in mental health to see a behaviour and attribute this to mental illness. Normal behaviour can become pathology all to readily. The way to challenge this is to understand the behaviour. The behaviour may be wrong (e.g. taking food from someone elses plate) or may be unacceptable (e.g. pushing people to the floor when they're in your way) but this isn't about moral judgement it's about understanding. Why did the behaviour arise? Was it the situation that made the event almost destined to happen? Was it the interaction with staff or residents that escalated frustration? Was it that the person had tried to communicate and now couldn't see any other way of behaving? Was it to do with the person's beliefs or experiences that cause a certain reaction? We have to spend a lot of time in care homes and a lot of time with family and carers to then be able to suggest interventions that form appropriate person centred care.

All a bit abstract, so here're two real examples.

One patient with Alzheimer's disease in an EMI residential home was settled almost all the time, but occasionally would wander and occasionally would pack clothes at 4.30am (when he'd always woken up and had to get up all his working life as a miner, to get to the pit on time). None of this was problematic. What was difficult was meal times. In the dining room every breakfast, lunch and dinner he'd throw things. Food, crockery, cutlery, whatever. He'd shout and moan. He was too demented to express himself lucidly when distraught. His wife gave us the answer. He hated sitting with his back to people walking behind him, with him not knowing who they were or what they were doing. All his life in cafes or meals out, he hated being in the middle of a room. When he was seated with his back to a wall, almost all his frustration and challenging behaviour evaporated.
Through knowing him, he got better care.

One lady with Alzheimer's disease was wandering a lot in the corridors and grounds of a large EMI nursing home. She often (twice a day or so) would get upset and sometimes cry but with frustration and anger rather than sorrow. She'd shout repetitively, she'd rail against carers and repeatedly slap furniture and walls. This would last anything up to an hour and a half, with her shouting and tap tap tapping the wall.
Solution : understand what works for her, to help her feel calm and relaxed.

How was this done? We spoke with her and her family and the care staff in the EMI unit. This was documented within a diary, detailing an increasingly richer picture of her and her world.
So from this, should the answer in her care plan be : "When distressed, people around make a difference. This can help de-escalate her distress and associated behaviours."
No. Not good enough. What do people do that makes a difference, is it that she needs one to one time with her hand held and close contact and eye contact and talk and reality orientation? Or is that proximity winding her up, is she best left and given space and encouraged to pace and discharge her emotion through walking, walking, walking around the grounds?
So from this, should the answer in her care plan be : "When distressed, she responds well to having one to one care, through someone being with her."
No. Not good enough. What do they do that makes a difference? We still don't understand what the person does.
So from this, should the answer in her care plan be : "When distressed, a person needs to sit with her for 20 minutes, sitting near to her but not within her immediate personal space."
No. Still not good enough. We understand what the person does, but we still don't understand the quality of the interaction so can't yet understand how to help her.

What is culminated to was that she was relaxed when someone was with her but there was no pressure or expectations placed upon her. She didn't do well when people tried to talk with her, she didn't have the concentration and attention span to engage in a 10 minute conversation so became more frustrated and distraught. Equally she didn't want to be ignored. She wanted human contact and company so did better if people were around her rather than being left on her own. A lot of eye contact and sitting facing her and a lot of questions, especially open questions, were bewildering and threatening to her, making things worse. She didn't want to be asked how she was or how she felt or what she fancied for supper or how she'd like to fill time through the sunny afternoon. This gave us a solution for her.
Her care plan read along the lines of, "When distraught, she benefits from staff input. This needs to be one to one, sitting at the side of her, doing a passive activity shared together. This shared contact should continue for 20 minutes in order to be therapeutic. Her preferred activity at the moment is watching old black and white films, sitting with someone as a shared experience of something familiar to her but in a situation where she doesn't have to respond or react to other people. After 20 minutes of sitting and watching it with her, staff can leave her to continue watching her film alone."

Knowing how a shared human contact impacts upon that lady, so understanding the detail of what key elements need to be in place, that's what my team and I do for folk with dementia when medication's not the answer.