Do something new... and celebrate

Welcome to the last 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 7: Celebrations

Most care homes I’ve been involved with, either personally through my dad or other family and friends or professionally through my work, are good at helping residents to celebrate their birthdays. The joy of a decorated cake with candles and a cuppa was a yearly event for my dad, but there is so much more that we can do with celebrations.

Birthdays and Christmases are the obvious examples of celebrations, but wedding anniversaries or new grandchildren (or great grandchildren) are also reasons for people with dementia in care homes to want to celebrate. We can go a lot further too, because celebrations aren’t just about the personal, they can be national celebrations too.

Dates like Valentine’s Day and Easter are easy to celebrate, but what about following national events like general elections, royal occasions, commemorations, major sporting events (examples include the Grand National, Wimbledon, the British Grand Prix, the Ashes, the Six Nations Rugby and football's showpieces like the FA Cup or the World Cup Final). Many of these events are freely available on terrestrial TV, but even if there is something on SKY TV that you don’t have access to, why not look out for a late-night terrestrial TV highlights package to record or get the papers the next day and make a collage of the coverage?

How many people, for example, would love to watch Match of the Day, the Last Night of the Proms or the Festival of Remembrance but are already in bed by the time they are televised? It wouldn’t take much effort to record them and make them available the next day for anyone wanting to see them.

Time often passes slowly in a care home, and without constant orientation to the day and time many people lose track of what day, week, month or year they are in. Most of us in that situation would do likewise. But by marking celebrations and major events, it provides the milestones that help to keep the sense of time and place that so many of us take for granted. 

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

Keeping it relevant: http://d4dementia.blogspot.co.uk/2012/10/keeping-it-relevant.html

Christmases past and present: http://d4dementia.blogspot.co.uk/2012/12/christmases-past-and-present.html

Happy birthday to my dad: http://d4dementia.blogspot.co.uk/2015/04/happy-birthday-to-my-dad.html

Until next time...

You can follow me on Twitter: @bethyb1886

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Do something new... and go outside!

Welcome to the sixth 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 6: Getting out and about

One of my greatest frustrations about care homes is the fact that so many of them have effectively become prisons, not because the people living in them have done anything wrong, but because of fears over safety and security, and a lack of care workers to facilitate getting out and about. However, this has to change; locking people up when they’ve done nothing wrong is, frankly, inhumane.

Granted, not everyone living with dementia in a care home wants to go out and that is entirely their choice, but many other people would love to enjoy the care home's garden, pop to the shops to buy a new outfit or a newspaper, visit a coffee shop, take a walk (or be pushed in their wheelchair) in a local park or go to the pub, they are just never given the opportunity. Even if a care home offers these options, it is usually to the same old places, which might be perfectly fine for some people, but if extra effort needs to be made to find a coffee shop where the cakes are tastier, or a pub serving different local beers, then that should happen.

In order to get my dad out and about in his local area we initially used taxis suitable for disabled people, and then eventually found a community mini-bus to hire for a very nominal fee. This enabled us to go further, including to family attractions, an open farm and a local wood with a café. All very enjoyable days out, not just for dad but for us as a family and for the care workers who were involved.

Best of all, not only does getting out provide stimulation and enjoyment, it can help with improving appetite and sleeping patterns and reducing distressing symptoms. So, do something new this spring/summer and help your residents, or your loved one, to get out and about.

More information, tips and advice on making use of the great outdoors can be found in the following D4Dementia blog post:

The sun is out: http://d4dementia.blogspot.co.uk/2012/07/the-sun-is-out.html

Next post on 23 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Do something new... with entertainment

Welcome to the fifth 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 5: Entertainment

Following on from yesterday’s blog post on learning and education in care homes, I wanted to pick up the specific themes around entertainment and expand on those. So much of ‘entertainment’ in care homes is a blaring TV (or many blaring TV’s), often with people sat in front of them who honestly look like they would rather be anywhere else than in that chair watching daytime TV.

Yet entertainment can be so much more than the bog-standard. Box sets of favourite films can recreate a movie theatre experience, book clubs and storytelling can enliven the creative juices, drama and theatre groups (either external local groups or a group made up of residents, relatives, friends and staff) can bring stories to life, visiting instrumentalists can provide evocative memories of learning to play an instrument, big sporting events can join people with different allegiances together in friendly banter, board games and other traditional forms of entertainment can be wonderful for reminiscence, and a visiting choir, or indeed a choir made up of people who live and work at a care home, can not only make beautiful music but help to form bonds and friendships over music. Some care homes have even successfully integrated video game consoles into the options they offer their residents.

If you are going to invite people into your care home to provide entertainment, first of all find out if they are offering something that no one else you know does (there will be lots of untapped talent amongst residents, relatives and staff!), and secondly think broadly. Singers of different genres (not just an Elvis impersonator), circus entertainers, dog show demonstrators, the list is a long one, and don’t forget to make enquires amongst different cultural leaders in your community – the UK is very diverse and there are some fantastic forms of entertainment specific to different cultures that you would otherwise need to travel to far away lands to experience. 

And remember, the only limit to doing something new with entertainment is your imagination.

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

Singing from the same hymn sheet: http://d4dementia.blogspot.co.uk/2012/05/singing-from-same-hymn-sheet.html

Remember, remember: http://d4dementia.blogspot.co.uk/2012/10/remember-remember.html

Next post on 22 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Do something new... and learn something new!

Welcome to the fourth 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 4: Learning

Very few people associate education with people who live in care homes. The common misconception is that individuals who move into care homes have learnt all they are going to learn and are either incapable, or will soon become incapable, of learning anything new. If you ever wanted a greater example of how to debunk these myths, however, then look no further than this inspiring film from ‘Learning for the Fourth Age’.

Learning is both possible, and in fact highly recommended for people at any age and stage of life. For people who are living with dementia it can help with self-esteem, mental agility, confidence, independence and offer a really tangible opportunity to enhance wellbeing. Learning is also a great way to bring families together, with education bridging gaps between generations and enabling younger relatives to teach their older loved ones new skills that they have already mastered (perhaps with technology, a topic I wrote about for yesterday’s blog), and indeed vice versa – never underestimate the things you can learn from spending time with older people.

Education in care homes really can be anything from gardening to pottery, painting to learning a musical instrument, reading books to learning songs or even a new language – the only limit is your imagination and the interests the person with dementia, their family and care workers have. If your budget allows you may consider bringing in external tutors who can provide specialist learning support, but don’t ignore the often untapped talent that lies within the many individuals who make up a care home. Residents, staff and family groups are often very diverse in their skillset and interests, including cultural diversity and the ability to teach skills learnt in distant childhood lands that you would otherwise have to travel many miles to experience.

Whether you decide to pursue group learning or one-to-one classes, just make sure you never forget the power of people with dementia as educators in their own right – with rich life histories, you might just be surprised what people remember how to do and could teach you!

More information, tips and advice on learning can be found in my Huffington Post blog:

Never stop learning: http://www.huffingtonpost.co.uk/beth-britton/never-stop-learning_b_5723358.html

Next post on 21 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Do something new... with technology

Welcome to the third 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 3: Technology

The idea of using technology is a controversial one in dementia care. Some care homes embrace iPads, iPods, daily living aids, Skype, monitoring equipment and even GPS, but many more either ignore it completely, or make expensive purchases that are never fully utilised. If you’re in the latter two categories, now may be the time for you to consider doing something new with technology.

Many care providers associate technology with the classic health and safety options of sensors and alerting systems. I’m not saying that sensors that detect motion or devices that alert staff when a person has fallen aren’t great, of course they are and they should be used appropriately for every person who would benefit from them, but for life in a care home to have the richness we all take for granted when we close our own front doors, it’s vital for care providers and families to think about ways to promote independence, creativity, connectedness and fun.

I would never advocate using technology to replace one-to-one human interaction, but there are elements of technology that can greatly enhance the lived experience of people with dementia in care homes. Having a clock designed to help people with dementia find out the day and time can help with orientation and maintaining independence, personal music players like iPods can be a fantastic therapy for alleviating upsetting symptoms, and devices like talking electronic photo albums can provide reassuring visual and audible reminders of relatives when they are absent.

There is also an increasingly strong argument for having Wi-Fi in care homes (providing you also offer access to devices that can use that Wi-Fi!). Once you have an internet connection and a device a world of possibilities opens up, not least with helping residents to maintain connections with relatives far away, and helping staff to get to know those relatives and involve them in the care and support being provided by the care home. Skype is a perfect example of this in action, and some care homes also maintain Facebook pages to share photos and news, all of which has the potential to help bridge intergenerational divides between older people in care homes and the younger members of their families.

As ever though, be mindful that using screens to interact (particularly via Skype or electronic photo albums) isn’t suitable for everyone – some people may find them as upsetting as others find them reassuring. Being person-centred with the support you are providing is vital.

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

Getting technical: http://d4dementia.blogspot.co.uk/2013/03/getting-technical.html

Next post on 20 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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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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Do something new... with mealtimes

Welcome to the first 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 1: Food and drink

We all have to eat, and yet in care homes mealtimes, and indeed tea and coffee breaks, often become very transactional. The people who live in the care home are seated, the food arrives, the food is served, people eat, or are helped to eat, and two courses later everything is cleared away. It’s not always the most appetising process as stale smells linger in the air, nor does it promote eating as a really positive experience, but it is possible to turn that transactional approach on its head.

Some care homes actively encourage their care staff to eat with their residents. This promotes inclusivity, enables a supportive watch and learn approach for people with dementia who are perhaps struggling to remember how to use cutlery or eat a meal, and is an added perk for hard-working and dedicated care staff. Equally, why not encourage relatives to join in mealtimes – some of our happiest times with my dad were spend sharing a meal together at his care home. Think also about anything residents could do to participate in the mealtime experience - helping to lay the table, serve food or clear away. Some people may enjoy helping and feel it gives them an added purpose in life.

Mealtimes and break times don’t always have to be in the dining room either. For some individuals with dementia routine is vital and you wouldn’t want to upset that, but for other people a picnic in the garden, or an afternoon cream tea on the terrace makes a really refreshing change that stimulates appetites and makes eating an enjoyable social event. All it takes is a bit of creativity and planning on the part of the staff team, and some enthusiasm/participation from relatives always helps too.

Finally, think about your menus. For some people tried-and-tested favourite meals are really important, but another individual whose appetite is flagging and weight is dropping away may need their diet to be invigorated with new tastes (and possibly stronger tastes if their taste buds aren't responding too well), different styles, presentations or consistency (thinking here particularly about pureed food for people with a swallowing problem). Time of day is also important. Not everyone wants to eat when the routines of the care home dictate they should eat, so be mindful of individual preferences and ensure they are catered for.

More information, tips and advice on food and drink, eating and dining techniques can be found in the following D4Dementia blog posts:

Food for thought: http://d4dementia.blogspot.co.uk/2012/05/food-for-thought.html

The digestive balance: http://d4dementia.blogspot.co.uk/2014/03/the-digestive-balance.html

Hydrated and happy: http://d4dementia.blogspot.co.uk/2013/05/hydrated-and-happy.html

Hard to swallow: http://d4dementia.blogspot.co.uk/2012/09/hard-to-swallow.html

Next post on 18 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Think about the ‘Dementia Words’ that you use

As this year’s Dementia Awareness Week rapidly approaches (17-23 May), I anticipate that there will be a surge in coverage related to dementia in the UK. Indeed, it was the start of Dementia Awareness Week in May 2012 that saw me begin D4Dementia, so I know only too well how inspiring this focused week of awareness raising can be. 

In amongst everything that’s written during this forthcoming high-profile seven days for dementia, I hope that the values of the 'Dementia Words Matter' Call to Action will be at the forefront of writer’s minds. It’s a Call to Action that I signed up to on the day it was launched – 20 March - and something that I am hugely supportive of.

'Dementia Words Matter' sign up board on launch day

The aim of 'Dementia Words Matter' is to ask anyone writing, reading or talking about dementia to Check, Change and Challenge the language being used to describe dementia. Signatories are being asked to use words that are accurate, balanced and respectful rather than extreme and sensationalist. In practice this means abandoning phrases like 'sufferer', 'burden', ‘demented’, ‘senile’, ‘victim’, ‘plague’ and ‘living death’ in favour of ‘person/people with dementia’, ‘person/people living with dementia’ and ‘person/people living well with dementia’. The misrepresentation of the word ‘dementia’ is also mentioned, as is the use of terms like ‘dementia patient’ and ‘service user’, and there is a request to consider using appropriate accompanying images rather than the usual generic pictures that often convey a very negative message.

The Call to Action is being led by the Dementia Action Alliance, of which I am a national member, and DEEP (Dementia Engagement and Empowerment Project). DEEP is a fantastic project that brings together people who are living with dementia to help ensure that their voice is heard at local and national levels, and it is the DEEP ‘Dementia Words Matter’ guide that has inspired this Call to Action.

One of the posters created to support the 'Dementia Words Matter' Call to Action

I recognise that to many people this may seem like simple semantics - I've heard individuals question why such campaigns even matter - but I have long championed the need to use language as a tool to help change attitudes, writing in March 2013 about my 'Trouble with the language'. As the ‘Dementia Words Matter’ literature points out;

“The language we use to talk about dementia influences how people with dementia are viewed and also how we feel about ourselves”.

If people with dementia didn't find words like 'sufferer' or 'burden' offensive this wouldn't be an issue, but many - not all - clearly do, and this is an incredibly easy change we can all make in how we write and talk about dementia. I also think there is a point around improving the lived experience for people with dementia - many ways of doing this are complex and time consuming, but our use of language is one really quick and easy way to help make a positive contribution.

Over the last couple of years I have seen an improved awareness of the language being used to describe dementia, people living with dementia and different aspects of the symptoms and progression of dementia, but there are still far too many examples, particularly in the national press, of words being used more for their headline-grabbing value than their descriptive power.

As ever, there are issues around individual viewpoints that cloud these arguments. Many carers observing their loved one with dementia would instantly say that their loved one is suffering, although the alternative argument is that the carer perhaps misinterprets the suffering they feel as the suffering of their loved one. Some people with dementia feel that using the phrase 'dementia sufferer' is a fair reflection of how they experience life, but others argue that it isn't the dementia itself that a person sufferers with but other conditions that become more prevalent as dementia progresses - common infections like pneumonia and UTI's being a classic example.

Thinking back over my dad's experiences, we never had a conversation about language. In the main my feeling is that he lived with dementia, and generally lived quite well, but he suffered when he became ill with infections, when he developed pressure sores, when he lost his mobility and eventually became confided to bed. I think in any of those situations anyone might feel they were suffering. 

Overall though I didn't view him as a 'dementia sufferer', in fact given everything he had to cope with over the years he was astonishingly upbeat, with a classic English 'stiff upper lip' and an amazing ability to take what was thrown at him by his body and have great serenity and grace. To me, terming him a ‘dementia sufferer’ would almost undermine those qualities that he showed day in, day out until the end of his life. It is a phrase that speaks more of his deficiencies than everything he overcame even when the odds were stacked against him.

Another poster created to support the 'Dementia Words Matter' Call to Action

Ultimately though, whether you agree with me or not, if some simple changes in language help to empower people currently living with dementia while breaking down the stigma and negativity that often prevent people who have symptoms that could be related to dementia seeking medical help, then that can only be a good thing. Those kind of positive changes go to the heart of what Dementia Awareness Week is all about.

Of course no change in language, regardless of how carefully thought out it is, and no matter who is fronting the campaign for the use of particular words , will ever please everyone or reflect every experience but for the forthcoming Dementia Awareness Week, and beyond, I hope that you and your organisation will consider signing up to the ‘Dementia Words Matter’ Call to Action, and most importantly of all, embedding the principles requested of signatories.

Until next time...

You can follow me on Twitter: @bethyb1886

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