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Monday, 18 September 2017

When behaviour changes…

Last week I began a series of roundtable sessions with the staff of one of my social care consultancy clients looking at changed behaviour for people who are living with dementia.

The topics for discussion are pretty diverse, everything from verbal and physical aggression to repetition, paranoia and accusations, walking and restlessness through to anxiety, tearfulness and feeling emotional, wakefulness and disturbed sleeping, through to losing, hiding or hoarding objects/items and losing sexual inhibitions.

Whatever direction our conversations go in, the focus is on understanding and supporting the person with their symptoms, and if possible finding ways to alleviate those symptoms. I am completely against any references to challenging behaviour and the inevitably negative pathway that terminology leads us down.

I have written before about the need to understand that any behavioural changes a person with dementia is experiencing are most likely due to an unmet need. In essence, behavioural change is a way of communicating when trying to make yourself understood in other ways simply isn't possible because of your dementia.

The cause of behavioural changes can be physical (something happening in the person’s brain because of their dementia or another physical or mental illness) environmental (including within a previously familiar environment) or human (directly resulting from being in the company of a person or persons). Sometimes there is no obvious cause at all, which is why behavioural changes are so difficult for the person themselves to cope with, and for those around them to support appropriately.

Reverting to medication is, for me, the absolute last resort (See my blog on the 'chemical cosh'), and as understanding of dementia grows I hope that more health and social care professionals will embrace a care and support approach rather than a medication approach, and indeed families and people with dementia themselves will advocate ever more strongly for this.

As someone whose father was medicated with antipsychotics (and other sedating medication), I know first-hand how dad’s symptoms improved when that medication was removed. But what are the options if you want to take a care and support approach? My top tips are:
Person-centred support at all times 
The person at the centre of their care and support at all times might sound like a simple idea, but it still doesn’t happen universally. Pay particular attention to listening to the person and observing their body language - it will tell you a lot about how they are feeling. Empathise and understand, tuning into the person’s needs (either explicitly stated or what you can learn by reading between the lines), and reflect on your interactions - what have you learnt? What could you change?
Ensure the person has access to purposeful and meaningful (to them) occupation 
Occupation is many different things to many different people - it may be something personal to the individual (like a hobby or interest), it may involve being supported to care for themselves (For example, with personal care or when making drinks or meals) or it may involve doing things for others (For example, advocacy, volunteering, using craft skills to make useful items, befriending or peer support). Whatever occupation means to the person you are supporting, make sure they have the opportunity to pursue it to the fullest possible extent. 
An environment that is responsive to the person’s needs 
Environment is so often overlooked when thinking about supporting a person with dementia. A ‘dementia friendly environment’ may sound like a cute and cuddly phrase, but it’s actually really important, and it’s about a lot more than just signage and red toilet seats! If the person is disorientated in their environment, frustrated at being unable to navigate, feeling unsafe, confused, or angry as a result of their surroundings, it will undoubtedly feed into distressing behavioural symptoms for the person.
Preservation of the person’s independence and individuality 
When a person is diagnosed with dementia, the tendency is often to do things for them rather than with them. Big mistake! Involve the person in everything you are supporting them with. Avoid being risk-adverse, and give the person the opportunities they need to be themselves and to shine. Embrace the person's life story and everything that makes them who they are.
Ensure that the person isn’t experiencing any undiagnosed pain, symptoms of another physical or mental health condition or side-effects of medication(s)
Get concerns about other health problems checked out, being persistent with health professionals if necessary. Be particularly mindful of any pain problems, as these are often missed in a person who is living with dementia. Pain can be extremely debilitating, affecting the person’s whole outlook, and chances are it will be a contributing factor in any behavioural symptoms they are experiencing. Also be mindful of the effects of medication(s).
Support for the person’s wellbeing and positive relationships with the individual(s) involved in their life 
Never underestimate wellbeing. It’s a barely understood word (which means to be comfortable, healthy and happy) that can have big implications when a person with dementia isn’t experiencing it. Equally, fractious relationships (which are common, particularly in family situations) are very counterintuitive when it comes to supporting behavioural symptoms. For family members in particular, being aware of how to improve your own wellbeing and participate in healthy relationships is as important as focusing on these aspects for your loved one. If you project a positive approach (For example, I endeavoured - although didn't always succeed - to never to cry in front of my dad) that will rub off on those around you.
Of course, in a perfect world everyone’s care and support would follow these principles. If it did, many of the changed behaviours that are associated with dementia would be greatly reduced, and for some people, barely noticeable at all. Perhaps then, the greatest tip of all is to say that it’s never too early to begin these good habits. Waiting until the person you are caring for is living with behavioural symptoms associated with their dementia isn’t too late, but it certainly isn’t as early as it could be.

The power to turn around the tide of ‘challenging behaviour’ negativity and show a caring and supportive approach to the changed behaviour that is associated with dementia is something that rests with each one of us, no matter what our role or responsibilities.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 14 August 2017

The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)
·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.
Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Tuesday, 18 July 2017

I need you

In my 2013 blog post ‘What is dementia’ I focused on the symptoms of dementia, noting the following amongst my very long list of ways in which a person can be affected by dementia:
“An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things”
Back then, I wasn’t aware of the phrase ‘trailing’ or describing a person with dementia as ‘following’ others around. I literally just thought of the need to be close to someone you trust as a need for reassurance.

However, watching the recent BBC Documentary ‘Granddad, dementia and me’, the phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need to be constantly with Pam had, for Pam, got to a point where she needed some time away from Tom.

The film throws up numerous issues which I will explore in my August D4Dementia blog, but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's wellbeing when they were happily reunited towards the end of the documentary, is a really interesting one.

From the perspective of a spouse or family member, if you are used to your loved one being fairly independent, the way in which dementia can leave a person without the confidence to be on their own can be difficult to understand, adjust to or successfully support. Many spouses or family members end up feeling suffocated and like they haven’t got a minute to themselves. This was very strongly portrayed in ‘Granddad, dementia and me’ which in the early part of the film really made Tom look - to someone without a good understanding of dementia - like he was a nightmare to live with.

Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain caused by his vascular dementia (the same type of dementia my dad had) weren’t Tom’s fault (even with risk reduction, no one is guaranteed to not develop a type of dementia). These changes were even more baffling for Tom than those around him – unless you are a person living with dementia, you cannot possibly understand exactly what it feels like to be a person who is.

When things are happening to us that we don’t understand, the natural human tendency we have from birth is to gravitate towards someone who is familiar, who we trust, find comfort with and love. We want to know that everything is ok. And if we have an unmet need that we cannot articulate, the natural reaction is to search for someone who might be able to interpret this, which is most likely the person we are closest to in our life, usually our spouse if our parents are no longer around.

In parenting, this is a given. As mums and dads we accept and expect that our young child will seek us out when they need us, particularly if they don’t have the language to articulate their needs or the ability to meet them independently. Indeed, clinginess in a young child is otherwise known as the child seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.

I appreciate that in marriage this isn’t a given – you marry an independent adult and expect them to remain that way. But there is another way of looking at the reassurance a person with dementia needs from the person closest to them – You are their ‘secure base’. It is a mark of how strong your bond is that you are the person that your loved one needs to be closest to.

I’m not for one moment suggesting an adult with dementia is now a child – they remain an adult regardless of their cognitive impairment. But the narrative and attitudes we have towards happy and successful parenting, and the narrative and attitudes we have towards supporting a person who is living with dementia, are poles apart and children are definitely getting the better deal!

That is not to in any way undermine the huge efforts made by families around the world in caring for their loved ones who are living with dementia. I was appalled at the criticism of Pam and her family – yes, we can all spot mistakes from the comfort of our sofa, but when you are living the experience it is very different.

What I wish is that Tom, Pam and their family could have been shown receiving really proactive support to ensure that they could give Tom what he needed. The film showed that medicating Tom wasn’t the answer, and two periods as a mental health inpatient (including sectioning – my views on sectioning are here) didn’t help.

So what is general good advice for any family whose loved one wants to be with them 24/7:

Occupation and activity

One of the major features of the first part of Tom's film is how little he had to occupy himself with. He was never shown to have any responsibilities or daily tasks, meaningful occupations, hobbies or activities that he enjoyed – not a healthy situation for a person who’d been a high-achieving, hardworking businessman.
That is not to say that everyone who lives with dementia will feel motivated to do things, my dad certainly went through a period when he refused to do anything except watch TV and look at books, and many people with dementia develop depression alongside their dementia which can also contribute to not wanting to do anything, but presenting those opportunities and making them a consistent part of every day life is vital.
Disabling people when they still have capabilities is a disaster. Not realising the person still has capabilities is a double disaster.
Do things together

So, you might think that ideal occupations and activities are ones that the person does alone, but think again. The person may not know how to begin, let alone successfully complete, a task. Doing things together not only means you being able to guide the person, but it enables the person to model what you are doing – it’s a subtle activity that is often wordless, and may happen without you even realising it as the person watches and copies you. A simple but vital way to boost the person’s independence without them having to acknowledge ways in which they are struggling.
Get your environment in order

If the person can’t remember their way to the bathroom or the kitchen, they are more likely to rely on following you to find their way. Some dementia friendly signage and simple design changes can all help to augment the person’s independence – see the world-leading dementia design work from Stirling University for tips and ideas.
Be the voice of confidence and reassurance

You may well be tired of telling your loved one "You can do it", but dementia is a very big voice in a person’s life that, essentially, is trying to hold them back, making the person insecure, vulnerable and lacking in confidence. As the most trusted person in your loved one’s life, you have the ability to stop that juggernaut in its tracks (temporarily at least) by being a constant source of support, confidence and reassurance. As the Bette Midler song goes:
Did you ever know that you're my hero,
And everything I would like to be?
I can fly higher than an eagle,
For you are the wind beneath my wings
Accept the unsaid

Hard and exhausting though the need for constant reassurance and company may be, accepting three little words – that will most likely never be said out loud - can be transformative for your resilience.

"I need you" is what your loved one’s quest for reassurance and confidence is really saying. Take it from someone who was once that needed person, it may be hard at the time but it’s harder when you are no longer needed.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Wednesday, 14 June 2017

Why are you a carer?

On the face of it this is a really simple question, yet it is one that can generate so much discussion. It's something I've been asked a lot in the last few years in the context of, "Why did you care for your dad?"

People are often surprised that as a teenager, twenty-something and thirty-something I would have put my life on hold to care for my dad. Yet consider this: when people begin a family they are rarely asked, “Why would you want to have children?” despite the massive life-change and life-long commitment parenthood entails.

Although the motivation for becoming a carer, the reasons people continue with caring (often against a backdrop of significant difficulties), and the way in which many carers struggle to move on with their life after their caring role ends are very individual, there are some common themes that often surface when you talk to carers, and I want to explore those commonalities in this Carers Week 2017 blog.

Why become a carer?

Many people who’ve never been a carer often approach the topic under the premise that people who are carers have made a lifestyle choice to be so. Big mistake. I have never met anyone who woke up one morning and actively decided to become a carer for a relative or friend. Every carer I have met fell into caring for someone they love due to various circumstances, largely beyond their control, and generally never realised they were becoming a carer.

It is a well-worn phrase, but worth repeating: I never considered myself a carer for my dad, just a daughter looking after her dad.

My G8 Dementia Summit film

Do labels matter? In essence no, if you realise that you have taken on a responsibility that has consequences for your life and your health and are proactive in ensuring that you look after yourself as well as the person that you are caring for. In reality, however, the 'carer' label will - in theory - give you access to services (if they exist!) that without that label you wouldn't be able to access. If those services are fit for purpose, they can help to prevent carer ill-health and carer breakdown.

Why do you continue to be a carer?

Again, this question suggests most people make an active choice. They don't. Carers remain as carers often through a lack of choice, and as much as it may be very un-politically-correct to admit it, often through a sense of duty, obligation or necessity.

However, that isn't to underestimate the human emotions that accompany caring. They are potentially the biggest driving factor towards carers remaining as carers once you remove the 'circumstances beyond your control' element. Moreover, it's emotional ties that often keep a carer caring for longer than is perhaps good for them or the person they are caring for.

As much as caring is immensely difficult, there is something in the depths of the human psyche that wires us to prevent suffering in those we love and give comfort and support. The rawness of this emotional pull isn't the same for everyone though, which may explain why in a large family it's often one person who is the primary carer with other family members very much on the peripheries. And that is no one's fault - again, it's often a mix of circumstances with a good helping of emotions.

Why is it so hard to move on when your caring role ends?

Again, it's those emotional factors biting us in the depths of our hearts and souls. You don't spend that much time with a person, and potentially nurse them through the end of their life, only for your life to return to your pre-caring days afterwards.

For a start, the bereavement experience is very different - you aren't just grieving the loss of the person, but a loss of the purpose and routine you had. Caring, for all its challenges, is something many people become exceptionally adept at, and the feeling of doing something so important so well is a huge source of pride which can be lost when you are no longer caring for the person.

Why is capturing carer knowledge and experiences so important?

One way of combatting the loss of skills and purpose is to go into a social care role professionally, and some of the very best care workers I've met in my consultancy work have a strong background of being family carers. For other people, caring for 'strangers' is just too difficult after caring for a loved one, no matter how much we might say that 'Strangers are just friends you haven't met yet', or indeed the former carer's own health or age make such a career choice prohibitive.

My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that

The challenge for all of us, however, is to find ways of capturing carer knowledge - at every juncture of a carer's life - to benefit others, be they family carers or professionals. And if you are a health or social care professional, NEVER consider yourself more learned or accomplished than a family carer, be they a current or former family carer. That unique pull of circumstances and emotions creates a rarefied learning experience that really is - both positively and sometimes negatively - second to none.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Monday, 15 May 2017

Five things I wish I'd known before my dad's dementia

I've lost count of the number of times people have asked me for tips and advice when dementia has come into their life. With more people than ever before now living with dementia, or knowing someone with dementia, it seems apt for my Dementia Awareness Week blog of 2017 to share my top five things that, with the power of hindsight, I wish I'd known before my dad developed dementia.

1)      How much life changes

It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much. Clearly dementia utterly altered the course of my dad's life - last month he should have been celebrating his 90th birthday. Instead, the last 19 years of his life were characterised by slow cognitive decline and eventually a very marked physical decline too.

In a very different way, my life has completely changed as result of my dad's dementia, and it will remain so for the rest of my life. Those experiences don't leave you, even if you don't go on to work with people who have dementia as I have. For me there are two ways of approaching this change - either embrace it, appreciating what you've learnt/are learning and making the most of that knowledge by sharing it for the benefit of others, or at very least, allowing yourself to be at peace with it. Or you can rail against it, trying very hard to block it out, pretending it isn't or hasn't happened. I'm yet to meet anyone who has successfully achieved the latter, but that isn't to say it can't be done. As in all things, it is a matter for the individual, but to at least have a genuine awareness of the way dementia changes lives is, for anyone affected by it, the beginning of finding the path that is right for you.

2) What to do for the best

The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!).

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in this room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too.

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that.

3) What my dad would have REALLY wanted

This is tricky, because no one likes to think about a loved one developing dementia and eventually becoming physically frail and needing a care home or hospital care, or deciding about resuscitation and end of life preferences. The problem with never having these conversations, however, is that you are completely in the dark when decisions have to be made, and where dementia is concerned, decisions do eventually have to be made.

The most I ever knew about my dad's wishes? Dad would walk past a particular churchyard and say he wanted to be buried there. And he would very occasionally say that if he was very ill to 'take him out the back and shoot him'.

Basically, we didn't have a lot to base our decisions on. Yes, a deep love for and understanding of my dad, and a strong sense of doing right by him and adhering to what little we knew of his preferences (of course the law doesn't allow for what dad actually wanted!), but beyond that technically it was guesswork.

So if you have a chance to talk about Power of Attorney (in England this is in two parts, Health and Welfare) or make advance care plans, do it. It's difficult at the time, but even more difficult down the line.

4) How much memories matter

There is a massive focus on lost memories for a person who is living with dementia (despite the fact that dementia isn't just about memory problems), but less focus on how those of us around the person allow memories to slip away too. All those minutes, hours, days, weeks, months and years I spent with my dad during his dementia, and yet I have a comparatively tiny collection of photos, and no videos or written diaries.

Granted, I wasn't part of the smartphone generation back then, but when I think about the amount of moments I capture as a mummy to our daughter, I hugely regret not capturing more of my dad's special moments. And they were special, so very special, even when dad's dementia was very advanced. There are no second chances to record those moments, and even if you never look back at them, at least you have them. I don't have that option now, and while the memories in my head are strong and the photos I have very precious, I could have had so many more mementoes of our time together.

5) The lowdown on care homes

When you are suddenly confronted by a doctor telling you that your father won't be discharged home from hospital but instead must move to a care home, it's a shock. It's even more of a shock when you're asked to find a care home and have no idea what you are looking for.

We first encountered that challenge 14 years ago. These days there are loads of websites offering you advice, and I weighed into that debate a few years ago with this blog. Ultimately, my very top tip would be: Don't choose a care home that looks the best, choose one that feels the best. Gut instinct is crucial. And even if you never ever plan to go into a care home yourself, or for any loved one of yours to go into a care home, it doesn't hurt to be informed. You never know when life can throw you a curve ball, and dementia is a very curvy ball.

So, there is my 'Top Five'. Please share them, add your own dementia-themed 'Top Five' in the comments, and together we can help to make this year's Dementia Awareness Week more informative for all.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


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