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

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