Do something new... and pamper

Welcome to the second of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special.

Day 2: Pampering

Personal care is often a very task-orientated activity that only allows for the bare essentials of washing, dressing and being helped to the toilet. When time allows, care staff are expected to ensure that fingernails are cut and that people who want to see the hairdresser, barber or chiropodist are enabled to, but often that is as far as ‘pampering’ goes.

There is so much more that we can do to make people feel special, however. Small touches like a favourite scent in the bath, a hand or foot massage, painting nails or applying make-up for ladies who like that look, giving ladies who’ve had their hair washed a lovely blow dry (including putting a few rollers in for those who would enjoy that) or ensuring gentlemen have their facial hair shaved or trimmed the way they like it can all make a difference to how a person feels.

Many of these actions do ask for a time commitment, particularly if you’re going to make them luxurious experiences, but that one-to-one time is often vital for people living with dementia in a care home, and there is absolutely no reason why relatives can’t get involved in these activities too – I spent many hours doing my dad’s nails, cutting his hair and giving him a shave or a hand massage. Never underestimate the simple happiness and the huge bonding potential of making someone feel just a little bit more special than they did the day before.

Also, remember that pampering can go beyond making the body feel nice and extend to choices of clothing and accessories. The same drab outfits day after day (that are probably wearing away due to extensive high-temperature washing and drying) are likely to dampen anyone’s mood. Why not treat your loved one to a shopping trip, either by going out to the shops or via online or catalogue shopping, or even just jazz up tired outfits with new accessories. If you have the knowledge to turn yourself into a seamstress, you might even be able to remodel hardly-worn outfits, breathing new life into them. Even small details like different buttons, a fabric corsage (no pins!) or some sparkly trimmings can make a big difference to how the person wearing the clothing feels about their appearance. 

More information, tips and advice on pampering can be found in the following D4Dementia blog posts:

Little touches that make a BIG difference: http://d4dementia.blogspot.co.uk/2012/06/little-touches-that-make-big-difference.html

Humanity in care - The role of touch: http://d4dementia.blogspot.co.uk/2014/10/humanity-in-care-role-of-touch.html

A helping hand: http://d4dementia.blogspot.co.uk/2014/11/a-helping-hand.html

Next post on 19 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Christmases past and present

Christmas with dad

I think for most people Christmas is about the many traditions we each have for celebrating the festive season. For the last nine years our family traditions were modified to fit in with my dad’s life in care – this year will be our first Christmas without him, and to be perfectly honest I am really not quite sure what to expect.

Many people assume that visiting a loved one in a care home is hardly the ideal way to spend Christmas. I would admit it does take some adapting to – modifying your established routine can be a bit of an organisational and diplomatic challenge, eating two Christmas lunches (a small one with dad and then our main one with the wider family later in the day) is not ideal for the waistline, and you are in danger of spending the entire day rushing around to such an extent that you feel Christmas has totally passed you by, but I would not have missed those precious moments with dad for anything.

Our last Christmas with him came amidst the backdrop of huge problems within his nursing home (that I wrote about here), and dad himself was not at his best as he battled yet another chest infection. He struggled to eat much of his Christmas lunch and was entirely disinterested in his presents – in contrast to previous years when he demolished extensive 3-course meals and complained that he did not like his presents!

Our approach to Christmas for dad was always to make it as happy and festive as possible. We would decorate his room with traditional items that he was familiar with, fix his cards to the side of the wardrobe so that they did not mysteriously disappear, buy and wrap lots of presents (new clothes - since clothing wears out so quickly in care homes - and CD’s of much loved music were all staple presents), and arrive on Christmas morning, me resplendent in my Santa hat, with the camera and lots of festive cheer.

Our challenges were minimal, however, in comparison to the difficulties many family carers face when they are looking after a loved one with dementia at home over Christmas. For many carers Christmas is a time of isolation, and while their neighbours celebrate around them, 25th December will be just another day of relentless struggle and ultimately exhaustion. With so many services shut down for the holiday, Christmas can also be a nightmare time for getting help should your loved one become ill, or indeed be very frail and nearing the end of their life.

Even for carers who are more supported, many of the Christmas traditions can present challenges. For example some decorations can be dangerous if the person with dementia does not understand what they are, certain colours or flashing lights can cause upset, an excessively decorated or crowded dining table could lead to confusion, and even your menu may need to be adapted to take into account a loved one’s changing eating habits.

For most family carers, however, I think one of the greatest concerns can come from how visiting friends or relatives may react to your loved one’s dementia. Be mindful that they may need guidance to understand and support the person you are caring for appropriately. For example, it is not uncommon for people with dementia to forget how to open cards or presents – we coped with this by gently helping dad, rather than just waiting, or demanding, that he manage alone.

Of course whilst so many of us are focused on Christmas, is it also important to remember those people with dementia, particularly in care homes, for whom Christmas is not part of their tradition or religious beliefs. Their wishes can often be forgotten amidst the celebrations, and they can become even more confused or disorientated by Christmas paraphernalia that is alien to them.

Looking back now over those many Christmas with my dad during his years with dementia, I would advise anyone in the position that we were to make the most of those special times together. They do not last forever, and Christmas is overwhelmingly a time to embrace our families, particularly the most vulnerable amongst us. Sadly this year I will be putting my dad’s Christmas card on his grave, but memories of Christmases past (and particularly this one that I contributed to the Prime Minister’s Christmas dementia campaign ‘Xmas to Remember’) will warm my heart and hopefully ease the pain.

As this will be my last blog post of 2012, I will sign off by thanking you all for your support since I launched D4Dementia back in May. I am very proud of the way the blog has grown, the feedback from people of all backgrounds to say how much they have enjoyed reading it, and the recognition it received by being shortlisted for a Roses Media Award. My next blog post will be in January 2013, so until then keep warm, well and happy.

Merry Christmas, and may 2013 be the best year yet for improving the lives of people living with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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R-E-S-P-E-C-T

Having dementia should never change the way someone is viewed or respected, yet sadly it often does. Many people are unable to see beyond the disease to the person within, and as a result, it is frequently considered acceptable to treat someone with dementia in a way that you never would another adult of the same age who is not living with dementia.

During the years my father spent in care homes I saw practices and heard remarks that I found highly disrespectful and degrading. Very rarely were they ever directed at my father in our presence, but when we were not there you can imagine how conversations may have developed around him, and the impact that this had in his mind and his sense of who he was.

Issues around how we respect people with dementia are deeply rooted within personalisation practices encompassing an appreciation of the person’s life, choices, style and beliefs when they could express them freely. A simple example of this comes in how people living with dementia are sometimes dressed. When they appear in clothes that you know they would never be wearing if they were not in a care home with dementia, and even more so when those clothes are dirty or wet, it is disrespectful to the person, and a failing on the most basic level to appreciate the life that they had before dementia and the choices that they would make if they were able to.

In some cases these were clearly clothes that families had provided, and were very similar to what they themselves would visit in; a classic case of the younger generations imposing their style onto their loved one without thinking about what their loved one would want for themselves. Excuses are made about having clothing that is suitable for rigorous washing, and issues of comfort are also sited, but comfort is always achievable whilst maintaining dignity. Men in their 70’s and 80’s never grew up in a culture of tracksuit bottoms and t-shirts, so to find them wandering the corridors in such attire, often dirty and stained is, for me, disrespectful to the person and their heritage.

In their younger day you would most likely have found them in a collared shirt and tailored trousers; even my father, who never worked in an office and lived an outdoor life as a farmer, wore a collared shirt and tailored trousers. Those were dad’s choices when he was able to make them, so when I was making them my father was never seen in anything other than smart, roomy, comfortable chinos and a collared shirt; very washable, hard-wearing, practical and dignified.

Respect for the person and a steadfast maintenance of their dignity should never end when clothes are removed either. I have seen residents, male and female, wheeled down corridors from the shower room to their bedrooms, poorly wrapped in towels that leave them exposed, without anything to prevent them from passing urine or faeces as they are moved in full view of visitors, residents and staff. Indeed some staff members even found this amusing.

Other examples of lacking respect for people with dementia can come from how the aids they need, as a result of the physical decline associated with dementia, are referred to. The times I heard incontinence pads described as ‘nappies’ – perfectly fine if an 80 year old was 8 months old, but they are not. A man of 80 does not need his nappy changing, and to tell him he does, assuming that because of his dementia he knows nothing of what you are saying, is to assume far too much.

People with dementia have sensitivities, understanding that they cannot articulate, feelings, desires, and an inner voice that is most likely screaming to be heard. Using words attributable to babies and children is both disrespectful and also confusing to the person with dementia. They may well remember what a nappy is and wonder, as they look down at their fully grown body, why anyone would want to change a nappy on them.

There is a massive temptation, because many of the symptoms of dementia resemble a person regressing to often child-like behaviour or mannerisms, to treat an adult living with dementia as if they are now a baby again. However, just because someone calls for their mother does not make them a toddler, nor does the fact that they have incontinence or need help to be fed. Those physical symptoms are not who the person is, and they do not represent their thoughts or feelings.

Dementia takes so much from a person, but anyone who treats an adult like a child takes far more.

Until next time...

You can follow me on Twitter: @bethyb1886

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