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Tuesday, 18 April 2017

When losing, hiding or hoarding items becomes a problem

In May 2013 I wrote a blog post entitled 'What is dementia?' about the symptoms of dementia. I wanted to explore the different ways in which a person's dementia might manifest itself to reinforce the message that dementia isn't all about memory problems. One of the symptoms I listed is the subject of this blog post - losing, hiding and/or hoarding items or objects.

Most of us probably know someone who routinely loses things (their keys for example), many of us will probably hide things fairly regularly (presents and surprises for friends and family) and whole TV programmes have been made about people who hoard, so chances are either you, or someone you know, has a penchant for that.

Hoarding in particular is something many older people do, partly because of an accumulation of items from their lifetime, but also because hoarding can create what I'd describe as a safety blanket. Being surrounded by items which are familiar cuts down the empty spaces that can make a person feel like their life is bereft of meaning and purpose. In extreme circumstances hoarding can be as a result of a mental health problem, but that is rare.
So, given how 'normal' most losing, hiding or hoarding can be, you might be wondering what on earth they've got to do with dementia? In many ways the association is quite subtle - I would never say that being a person who loses, hides or hoards items is, on its own, a sign that the person either has a type of dementia or is likely to develop dementia in the future.

However, if a person otherwise not predisposed to losing, hiding or hoarding items begins to do this routinely and extensively, or if previous inclinations towards this significantly escalate, I would be concerned and consider if other symptoms are also present.

Equally, it's important to recognise that losing, hiding or hoarding aren't just symptoms associated with the development of dementia - they can also be significant factors in the life of a person already diagnosed, and are often then seen under the umbrella of 'behaviour', which is generally associated with the negative connotations of 'challenging behaviour', a phrase I dislike immensely, as explained here.

As a general rule, losing, hiding or hoarding items isn't necessarily a negative issue. Granted it can become one, for example:

   Losing items can cause a lot of frustration, which a person may struggle to articulate or cope with

   Hiding items can mean important documents or possessions can't be found, which may have negative consequences

   Hoarding may affect levels of cleanliness or result in items being lost

But there is a flip side:

   Consider if a person is hiding things because they are trying to create those surprises associated with their earlier life/childhood. What they are hiding might not be nicely wrapped presents, but the thought process might (in some instances) be the same as for gift-giving. Items may also be hidden if they are upsetting the person, or because the person no longer likes them but doesn't feel they have the autonomy to get rid of them

   Hoarding may be due to that safety blanket feeling I described earlier. It may also stem from feelings of insecurity or concerns that other people may want to remove items that are important to the person (even if you can't understand what that importance might be)

My message, therefore, is that as in pretty much every aspect of dementia, things aren't always what they seem. And jumping to conclusions, or attempting to be a human bulldozer through someone's life, may be very counterproductive, resulting in those ‘challenging behaviours’ that reflect the fact that your 'behaviour' is actually very 'challenging' to the person with dementia.

In the years prior to my dad's dementia diagnosis, he hoarded by going to local auctions and buying up lots of (what appeared to me) to be random items. He bought loads of books from library book sales and regularly visited charity shops to accumulate household items. As all of these items came into the house, so the house began to feel like it was shrinking.

He would hide towels in the bed – a pile of clean bath towels under the duvet was commonplace - and he would hide paperwork if it looked like a bill or anything official. And of course he lost lots of items - from money and keys, to his glasses or the remote control.

In dad's later years in care homes plenty of items got lost, but in that environment it was as much down to communal living as it was to dad not knowing where he'd put something. Items were still hidden, mostly because dad didn't want someone else to get them, and hoarding still happened when dad collected up other resident’s belongings.

How did we cope? We never managed to stop dad losing, hiding or hoarding items, but some steps we took to alleviate the associated problems were:

   Labelling items (especially when dad was living in care homes) and trying to have a specific safe place for things that really shouldn't be lost - a drawer for dad's glasses for example

   Knowing favourite hiding places so we knew where to look if we needed to find something

   Making sure dad could still hide presents and other surprises in the normal way that anyone would - dementia doesn't change the desire to surprise your loved ones!

   Trying to strike a balance between dad being surrounded by the things that were familiar and comforting to him, but without having stuff absolutely everywhere. As a result, when dad was in care homes his room actually had a lovely lived-in, personalised, home-from-home feel, and from what I've seen of other care home bedrooms, I actually feel that a little bit of hoarding might be a good thing to remove the bare, clinical feel these rooms often have.

If you are a 'tidy person' (I am), it can be immensely difficult to support a loved one who hoards, but I would just add this: One person's chaos is another person's comfort. You may look at it and wonder how you will ever sort it out 'when the time comes'. The antidote for this feeling is simple: live in the present, with the person as they are. Make the most of the time you have together and don't stress the small stuff (even when there is what seems like mountains of it!). 'When the time comes', as it sadly did for my dad, the sorting out gives you a sense of purpose which, for me, was strangely helpful.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Thursday, 16 March 2017

Another pill won't matter, will it?

There is a common misconception that there is a pill to fix virtually any health issue. I've written about this before ('A pill for everything?') in relation to medications for dementia (most notably prescribed for people with Alzheimer's Disease), but for this blog post I want to concentrate on a topic I'm seeing with alarming frequency in my consultancy work  - Poly pharmacy.

What is poly pharmacy?

Poly pharmacy is when a person, often an older person, is taking 4 or more medications. It's often related to older people because as our bodies age, more can start to go wrong that requires medication (or that it's perceived requires medication). Poly pharmacy is also more dangerous as we age because our bodies often can't cope with multiple medications as well, putting strain on vital organs and potentially affecting the person both physically and mentally.

How does poly pharmacy happen?

Very easily! Common medications that occur frequently in cases of poly pharmacy include drugs to treat high blood pressure, digestive problems, pain, diabetes, thyroid problems, sleeping problems, and medications for depression/mood/behaviour. Indeed, many times in my dad’s life with vascular dementia he was prescribed more than 4 medications, making him the subject of poly pharmacy (although we had never heard of this at the time).

There is a well worn joke that as you age you 'rattle' from all the pills you swallow, but poly pharmacy is no laughing matter, nor should it be ignored or considered 'the norm'.

Why is poly pharmacy a problem?

Once a person is taking more than 4 different medications, pharmaceutical companies cannot reliably tell you what the side-effects might be. Of course there might be none, but there could also be serious underlying problems developing that the person either is or isn't aware of. Unchecked, at best these can impact on the person's quality of life, and at worse could lead to serious illness or injury (for example falls if the person experiences sleepiness as a side-effect).

How does poly pharmacy impact upon a person with dementia?

Many people with dementia also live with other long-term conditions that require medication, or they are given medication to prevent certain conditions from developing (for example a statin because it's believed they lower cholesterol, although opinions are divided). Given the nature of the cognitive problems that characterise dementia, the person may be more vulnerable to being given medication because unlike someone who isn’t living with dementia, a person with dementia may not have the communication ability, or confidence, to question a prescription effectively.

The tipping point

The tipping point into poly pharmacy will vary from person to person, entirely dependent upon whether the individual has historically been a person who has lived with multiple long-term conditions for a long time prior to their dementia and is used to managing some or all of those conditions with medications.

However, the prescription of anti-dementia medication upon a diagnosis of dementia might take a person into the realms of poly pharmacy, as might the prescription of sleeping medication or anti-depressants, both of which are common pharmacological ways of 'managing' problems a person with dementia is perceived to have with 'behaviour'.

Questioning the prescription of such medication to manage 'Challenging behaviour' (a phrase I dislike - read this blog for the reasons why) is particularly important because these medications are often used instead of the more controversial antipsychotics. Antipsychotics have been the subject of a target to reduce their prescriptions since they were linked with serious side effects and even the premature deaths of people with dementia.

Replacing one 'chemical cosh' with another one, albeit potentially a milder type of medication, is still dangerous in my opinion, especially in a person already taking other medications who is then at risk of poly pharmacy.

Standing up against poly pharmacy

I feel strongly that everyone needs to understand the risks of poly pharmacy. That's not to say that every medication given is wrong, or that anyone should suddenly stop taking medications that may be absolutely essential to them. But awareness of poly pharmacy, the confidence to try and guard against becoming the subject of poly pharmacy, and regular reviews for anyone taking multiple medications is absolutely vital.

Doctors who understand poly pharmacy would always be very supportive of trying to avoid it, and only prescribing absolutely essential medications that are then regularly reviewed.

Supporting a person with dementia who may be at risk of poly pharmacy

Ideally, a person with dementia would be supported at medical appointments by a family member, friend or advocate, but that won't be the case for everyone. If the person is alone, or the individual with them doesn’t feel confident in speaking up or questioning a medication, then often the medication will just be prescribed.

Even social care professionals accompanying a person from a care home to a GP or hospital appointment may not feel they have the skills to question a prescription. For this reason, it is vital that training in poly pharmacy and empowering staff confidence is given by all social care providers, as they are often unofficial advocates for a person with dementia.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Tuesday, 14 February 2017

The thorny issue of mental capacity

(A note before I begin this blog: You should not consider anything written in this blog as legal advice for you or anyone you care for).

I've long thought about writing a blog on mental capacity for people with dementia, but two factors have put me off. Firstly, mental capacity is not an area of expertise for me. Secondly, most people (apart from those who are experts in this field) switch off at the mere mention of it - I know, I've been one of those individuals who have glazed over.

But bear with me, and this blog post. I want to explore three of the five principles of the Mental Capacity Act very much as a lay person, a former carer to my dad, and a person who believes strongly in the abilities of people with dementia to retain control over their lives.

For those not familiar with the five principles of the Mental Capacity Act, here they are: 

1) A person must be assumed to have capacity unless it is established that they lack capacity

2) A person is not to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success 

3) A person is not to be treated as unable to make a decision merely because he/she makes an unwise decision

4) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests

5) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the persons rights and freedom of action
Principle number one intrigues me from the outset, partly because despite the Mental Capacity Act having been law since 2005, most people who aren't aware of the principles of it assume that the moment a person is diagnosed with dementia they do not have capacity. The old phrase, "They've lost their marbles," springs to mind.
What I would say is that in my experience, not just with my dad but through meeting many other people who are living with dementia, mental capacity isn't a one-size-fits-all. Each individual retains their own level of capacity at any given point in their life with their type of dementia, and another person with exactly the same type of dementia who is believed to be at the same 'stage' (I wrote about 'stages' here) may have a very different level of capacity. Capacity is, therefore, completely personal.
Moreover, capacity is often a fluctuating state. So, for a person with dementia who has suddenly contracted an infection, their own usual capacity may be temporarily diminished, but when the infection has cleared, they may return to the same level of capacity that they had before. Even having a sleepless night might render a person to temporarily have a reduced level of capacity - as a mum to a 14 month old, I can certainly appreciate the effect of sleeplessness, and I am an otherwise healthy person who isn't living with dementia.
Other factors can play havoc with capacity too - for example, a person with vascular dementia who has had a new TIA (Transient Ischaemic Attack), a person with chronic pain (which may be undiagnosed), a person who's had a fall that's shaken them up, or someone with poor levels of nutrition or hydration. For all these reasons, and many more, it is vital that it's never assumed that a person lacks capacity today just because they (maybe) did yesterday.
The second principle regarding practicable steps is also an interesting one. Again from experience, I know that the idea of practicable steps varies hugely depending upon who is trying to ascertain if the person has capacity. It's very common to cut corners here, and simple steps to improve the person's ability to demonstrate their mental capacity can be overlooked. For example:

     Not considering if the person needs to be wearing hearing aids or glasses in order to communicate more effectively

     Whether the environment is appropriate for the person (Too busy or too noisy)

     Whether the person is comfortable (free from pain, not hungry or thirsty, no illness)

     Whether the person has had the medication that they need (or indeed if medication is affecting their abilities through undesired side-effects)

     Whether the right language is being used (is English the person's first language?)

     Whether the assessor has the right abilities (eg: To speak clearly and form a trusting relationship with the person who has dementia).

Finally, the third principle fascinates me, since the whole idea of an 'unwise decision' takes us into the territory of risk taking, something that I've written about in the past as being an area of dementia care and support that is often unduly and unfairly restrictive. Risk aversion is a huge issue, sometimes for the right reasons if someone's life is in danger, but often it's far more low level and about creating circumstances that work well for those providing care and support but considerably less well for the person with dementia.
That last point, more than any other, is probably behind why I've come to see the Mental Capacity Act, much like the Human Rights Act (which is gathering increasing interest and alignment with best practice in dementia care and support - see the work of Dementia Alliance International) as more than just dry legislation that isn't applicable to the practical world of dementia care and support.
Anything that helps support a person with dementia to maximise what they can do, rather than what they can't, is to be celebrated. If you do nothing more with the Mental Capacity Act than familiarise yourself with and practice its five principles, you will have gone some way to enhancing your understanding of people with dementia and refocusing your approach to providing care and support in a way that puts the person front and centre.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Monday, 16 January 2017

Routine, routine, routine

With a New Year often comes resolutions to change our routines. Things we've always done, that perhaps aren't so good for us, are intended to be banished in favour of routines that are healthier or that we perceive are better for us in some way.

Routine is in sharp focus for me since becoming a parent - the deluge of 'advice' on the best routine for your baby can be pretty overwhelming, and we decided before our daughter was born that we were going to do things our own way, responding to her as the individual that she is. To this day, we still don't own a 'baby book' that attempts to 'train' our child like a mechanical doll!

It's this parenting experience that has inspired me to think about how routine is perceived for people at the other end of the age spectrum, and particularly people who are living with dementia. The majority of professional 'experts' seem to be in favour of supporting the person with dementia to retain their own personal routine - that is until the person needs inpatient hospital care, or indeed residential social care, in which case their routine is mostly thrown out of the window and replaced with whatever the institution believes helps them to run their services most efficiently.

Whenever I've been asked about routine, I've generally advocated for the person's own routine to be maintained and protected to give the individual continuity. As so much changes for the person with dementia, this seems a sensible way to help the person to remain grounded in something that feels familiar and that gives them the best chance of maximising their independence. Most people I know who are living with dementia generally say that their routine is vital to their sense of wellbeing and ability to cope.

But there is one very important caveat. Be guided by the person. As family carers, or health and social care professionals, we should never be so wedded to keeping to what we perceive is the person's routine that we become oblivious to the person trying to change their routine. Often, if a person with dementia begins to stray from their 'normal' routine, we at best look to guide them back to it, and at worst become so obsessed with the routine that we berate the person for not adhering to it and try to forcefully pull them back into it, regardless of whether this is what they want or not.

It's the routine. It's how it's always been. It cannot change. Ever.

Except that this is tantamount to trying to fit a square peg into a round hole. It doesn't work. Routine should never become a watchword for control. For some people routine is vital, for others less so, but regardless of how the person has historically run their life they are completely at liberty to change that now. Just because the person is living with dementia doesn't mean that they don't know what they want.

Living with dementia may mean that the person can't necessarily find the words to explain what they want, and through our bombardment of communication, questions and nagging, may become so worn down that they either just give in - which could lead to feelings of worthlessness or depression - or fight back, which is commonly labelled by the ill-informed as 'challenging behaviour' (a term I dislike immensely).

As individuals providing care and support, we have to have the courage, however hard it might be, to take a step back and ask ourselves:

     What is the person trying to tell us?

     Have the person's needs changed to a point that their 'old' routine no longer works for them?

     Is there something about when the person wants to eat, sleep, wash or go out that is different because they are trying to respond to what their body is asking them to do? (We are not wired up to their brain or their body, and we cannot ever REALLY know what either is telling the person to do).

     Does the person want to change their routine just because they can? For a person not living with dementia, this might be positively packaged up as an 'important life change', a 'New Year's resolution', a 'health kick' or some other such celebrated deviation from the norm. Why when a person with dementia wants to change things is the reaction so often to throw our hands up in horror and declare that this won't work and shouldn't happen?

So often I hear from families, or health and social care professionals, who feel that there must be something intensely wrong with the person for changing their routine.

·     Is this a sign that the person's dementia is progressing? Maybe, maybe not. What is it a sign of is the person wanting control over their life, of having the ability to follow what they feel is right for them and the confidence to do that. So not an entirely negative turn of events.

·     How can I stop this? It's a type of arrogance to believe that you can or should. To take away choice and control is to condemn a person with dementia to a life that disempowers them and is completely counterproductive to what you should be wanting to support, which is to enable the person to live as well as possible with their dementia in a way that makes sense to them.

·     What can I do? You can support the person to find a new routine that works for them. That may be one set regime that they like to follow, or it may be a movable feast where every day is a little different. Yes, that can be hard to predict and more difficult to support than the one fixed routine, but it's about what the person wants and needs and they are the only real arbiters of that.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 12 December 2016

200 not out

I never thought I'd be writing this, but this post is my 200th on D4Dementia!

What began as a modest blog with an ambition to share some of the experiences (mostly positive) that we'd had with my dad during his 19 years with vascular dementia has taken on a life of its own, and despite all of my other work which arguably takes up more of my time now, I am still known very much as a 'blogger' and proud to be so.

As I've come to learn since 2012, blogging has an important role to play in dementia care and support. This blog has enabled me to share experiences that I would otherwise never have shared, and because it's freely available to anyone with a device and an internet connection it reaches people across the UK and beyond, something I couldn't do consistently through any other media.

I've learnt from tracking my audience that the posts you all like the most are the ones that give really practical advice, and if anything I'm mindful that I need to write more of those in the future. Helping people who are affected by dementia has always been my prime motivation in everything I do, and my blogging is perhaps the most accessible way that I can do that.

I also know from feedback that this blog is as loved by people living with dementia and their families and friends as it is professionals who, despite the raised profile of dementia and the increased focus on dementia training, still look to the internet to provide them with the information, advice and support that they need to do their jobs to the very best of their ability.

Amongst the millions of words I must have written for this blog, experience has taught me that some are more powerful than others. Sometimes a really punchy quote shared via social media is what ensures a blog post reaches the people it really needs to. It may be because the words express something that a person feels but cannot express themselves, the sensation of solidarity or comfort in what they've read, or because a quote sparks a thought or action that, ultimately, improves a service for people who are living with dementia and their families/carers.

So, in the spirit of sharing that's associated with this Christmassy time of year, here are some quotes from 5 of my 200 blog posts that give a glimpse into the passions behind my work:

“Everything my dad went through is there to inform, educate and influence others – I believe he would have wanted to make a real and lasting difference, and I hope that will be his legacy.” From ‘My dad’.


“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?” From ‘The carer’s job description’.


“Dementia takes so much from a person, but anyone who treats an adult like a child takes far more.” From R-E-S-P-E-C-T’.


“Above all else, remember this: care homes are for caring, prisons are for punishment.” From ‘From care to catastrophe’.


The only true representation of each person’s unique experience of living with a diagnosis of dementia is from that person themselves. Anything else is a substitution.” From ‘Why don’t we listen to people with dementia?’

So, what next for D4Dementia? Given the growth in other areas of my work I've decided to abandon my strict fortnightly Monday publishing regime and be a little more unpredictable in my blog posting. There will be at least one blog a month, but beyond that, I reserve the right to be spontaneous, not least because this gives me the option to react to news stories in a much more timely way. To make sure you never miss a blog, sign up to receive them into your inbox (you can do this via the box near the top of every page of D4Dementia) or follow me on Twitter or Facebook.

As a result of my new routine (or rather throwing the routine out of the window!), it will probably take me a little longer to reach my next milestone of 300 posts (my 100th blog was published on 13 November 2013), but I have every intention of reaching that magic 300 and going beyond it. Will I run out of things to write? I doubt it!

Wishing you all a wonderful Christmas and New Year. Thank you for your amazing support in 2016 - Here’s looking forward to 2017!

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 28 November 2016

The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...
Beth x

You can follow me on Twitter: @bethyb1886