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Wellbeing and living with dementia…

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Two things have recently made me think about the ways in which we as academics think about living with dementia; recent reading of wellbeing meanings in general and receiving a couple of battery hens.

On the face of it, neither of these things seem remotely related or relevant to dementia research. I agree and it has taken me a particular arduous scramble up Carl Wark to make the vague connection. Carl Wark is a Neolithic hill fort in Derbyshire which I managed to stagger up, across and down recently. Sometimes a walk on the wild side makes all the difference!

Anyway, let me try to make sense of these two things. For the past two weeks I have been struggling to understand the arrival and rapid decline of a couple of battery hens. These were acquired at a local animal sanctuary and seemed happy enough to travel in a delux cat basket to my home. On arrival things changed rapidly and despite following the advice to place each hen adjacent to the already established flock, each new hen became subdued and frankly ill. I was unsure why and so carted one off to the vets for a check up.

There is something very surreal about entering the puppy morning at the vets with a bald hen in a cat basket. I was greeted with varying amounts of amusement and conversation. The vet diagnosed a “roaring chest infection” and some £38= less  and a sturdy  bottle of anti-biotics we were on our way. Chest infections are not welcome in neither man nor beast; Hilda became a named pet (on account of the commitment to support her recovery) and so spent a week in the office in a large pen. Hens are naturally smelly but Hilda did seem to enjoy her spell indoors. Poorly hens stink. I was less enthused on account of the stench and constant coughing.  So what happened to me during this period?

Well I started to realise that if a battery hen has never seen the usual circadian rhythms of daylight then they expect to stay awake for up to 18 hours a day. Similarly if they have only known flat surfaces then perching is a skill to be realised. Likewise food is no longer rationed to particular periods and so the gluttonous behaviour was simply expecting the grain to be removed at any minute. Hens which have not been held confidently are generally nervous and respond by passivity or outright aggression. Hilda showed fluctuations in all these behaviours. Ethel by contrast developed a certain feisty and admirable demonstration of united strength towards all. I lost sleep and worried about my personal abilities to manage these two old ladies. It should have been so simple.

Over time, I changed my approach to dealing with these sparsely feathered friends and began to adapt a somewhat hen led model. This included trying to teach them to perch on very low branches, providing food regularly but not continuously and helping them sleep at night time by making their bedtimes regular and dark. And it is starting to pay off with feathers emerging and generally sleeping hens at night. The gluttonous response is taking longer although mixed grit and grain is helping to avoid overblown bellies and foul wind. I had assumed that these battery hens would easily assimilate into an established flock by the usual methods adopted by hen keepers. I was wrong and had to learn from the hens themselves to understand their needs.

At this point I want to stress that I am not likening people living with dementia on a par with battery hens. It just so happened that at the same time as looking after these bald coots, I had been reading an academic philosophical text about wellbeing in humans and the meaning of wellbeing. This was not some fanciful idea to pass the time but important to my work which seeks to understand what wellbeing means to people living with dementia. I thought there might be some interesting ideas in the text. There wasn’t and I was looking long and hard trying to find something meaningful to me and my quest. More I’m saying that I can be likened to the naïve hen keeper who had no idea of the real needs of my new hens. Why? Because generally there isn’t much out there about how to care for bald chesty emotionally wrecked hens. It’s not the forefront of talk amongst hen keepers who like to discuss free range matters, pedigree breeds and keep it all sanitised. Both reading the texts and sorting out the hens have been a struggle for me. I can’t even claim these struggles have been positive yet but time may tell.  

This brings me to gritty (pardon the pun) issue that many researchers face. Are our assumptions about living well with dementia based on our own lived expectations rather than those of people who experience dementia day-to-day? Well-meaning academics write about the ideas and meanings of wellbeing as if it only applies to humans who are in good (or at least average) physical, mental and emotional health.  My recent reading of this esteemed handbook of wellbeing has not one single chapter on the human experience such as a change in health yet devotes several on animal wellbeing (ok not hens but primates and others). It’s all a bit bemusing and not helpful to me as a researcher or a hen keeper.  We devote lots of funding and effort into understanding the human condition but not much into the human condition of falling apart, difference and generally growing older. Why is this? Is it our own myths which we perpetuate as “healthy” young beings? Is this obscurity about gradual decline and falling apart something I should be concerned about?  

The thing is this. If we are to build dementia friendly organisations, communities and the like then we need to understand the meanings of wellbeing across the lifespan. If we deny the downright indignities and challenges of living with dementia then in a way we are denying the ways in which we can develop and sustain dementia friendly societies. After all, the very real challenge is how to maximise independence and support new patterns of living well with dementia. We can’t do this without understanding the diverse changing lives of those with dementia and their carers. We need to openly discuss these challenges at every stage of the disease progression so that services and needs are designed to respond to these everyday matters.  

Is well being a possibility in dementia? Yes it is and this is the underlying thought. We need, as academics, to spread the word and be there to adapt and support the person living with dementia and their carers.  Change can lead to impressive gains in wellbeing. This then can be the cornerstone to building dementia friendly communities which sustain wellbeing across the lifespan. 

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wellbeing in dementia

I really enjoyed this blog, thanks Fiona. I think the point is well made that we can achieve well being in dementia. What seems to be required is attentiveness to the individuals' needs - in the case of the hens, getting a proper diagnosis and some treatment of the underlying problem. Followed by individualised care that takes into account the distinct personalities of the two hens.

Promoting a satisfactory sleep-wake cycle in care homes is quite a challenge too. A colleague was discussing with me this week a man who likes to go to bed at 5pm. That's a bit early even for my parents' generation. He is then disturbed probably by his neighbours moving about in the evening. He experiences voices coming from outside his room - are these really hallucinations or just misinterpretations? Should we give him earplugs or antipsychotic drugs, or maybe just more entertainment in the evening?

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