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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

 

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