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

LIKE D4Dementia on Facebook

The sun is out!

Dad and I enjoying the sunshine

There were many occasions during my father’s nine years in three different care homes when I honestly wondered if having dementia was a byword for keeping people in captivity. Day after day, week after week, residents were kept cooped up indoors, which during most of the year was relatively understandable due to the English weather, but on hot summer days people would still be sat inside, in their bedrooms or the lounges, sometimes not even with a window open, eating in stuffy conditions where food can begin to smell very unappetising, watching mindless television, consigned to a life most criminals do not endure.

It strikes me, writing this on a beautiful hot, cloudless English summer day, how torturous it must be to be kept inside, tempted by that blue sky and sunshine, feeling the heat, and being without anyone in the world to help you go and make the most of it. Everyone in those homes was retirement age, a supposedly golden time in your life of relaxation and enjoyment. You do not have to be stuck in an office, factory, shop or restaurant earning your living, you have done your work, now is your time to sit back and soak up the good things in life - why should having dementia change that?

For me that is the key point – dementia is perceived to change everything, and yet the disease is not who the person is, and unless as a result of their dementia the person has developed a phobia of going outdoors, scared perhaps of the uncertainty, unfamiliarity or perceived vastness of it, or has another medical condition that requires them to remain indoors, then there is no reason to keep them inside during perfect summer weather.

Sadly there were so many days, identical to today, where we would be the only family sitting outside with our relative. Carers were generally too busy, too short-staffed or lacking in the confidence needed to utilise the lovely garden, and successfully negotiate any health and safety challenges that might come from bringing residents outside. Even more disappointingly most relatives demonstrated a similar reluctance, even though they saw how much dad enjoyed his long hours of fresh air, sunshine, alfresco dining and napping under his panama hat.

Whilst familiarity and security in their environment is very important for people with dementia, stimulation and reminiscence are too. Most people will have enjoyed outdoor life when they were younger, and those with dementia may have particularly strong memories of summer days free and happy in the sunshine. If someone has led any sort of outdoor life in the past, and shows a willingness or interest in being outside, especially in such glorious weather, denying them that is akin to keeping them a prisoner in a life that they have not chosen and do not deserve.

There was a lady at one of my dad’s homes whose family openly admitted that she had loved the outdoors her whole life, sitting out in all weathers, tending her garden, eating  all her meals outside and having family BBQ’s. They said she would have felt like a ‘caged bird’ to be kept inside, and on the occasions when she was brought out into the garden, listening to her talking about the birds and flowers while lapping up the sunshine made it very clear just how much she loved it. Yet because she could not ask to go outside, both the carers and even her family very rarely took her into the garden. Her dementia effectively consigned her to being a spectator on a life that she must have been longing for but no longer had.

Providing people are well cared for and supervised outside (as they should be wherever they are), it is the most wonderful place to be for the fresh air and sunshine (a lot of people, especially the elderly, are deficient in vitamin D for example), and also for the emotional wellbeing provided by the natural stimulation of birds, plants and wildlife. Many care homes have sensory gardens (that I wrote about here) where scented, tactile plants are growing, and water features provide visual delight and also much needed serenity, calmness and tranquillity.

Another key benefit, and one that is often completely overlooked, is the advantages to eating outside. Fresh air, and even some mild exercise if appropriate, can stimulate appetite. Poor eating and drinking can often be a problem as dementia progresses, but appetising food served outside can help to remedy this. BBQ’s, done safely, can provide wonderful aromas to tempt an otherwise flagging appetite, and even having afternoon tea parties outside can revitalise jaded routines.

Good weather, of which we get precious little in the UK, generally puts most people in a better frame of mind, and this is no different for those who are living with dementia. Not only does their health and wellbeing benefit from some consensual outdoor activities, families and carers can have immense enjoyment from helping to facilitate this. Some of our most special memories, and photos, of my dad during his dementia come from our many hours sat outside with him. These were positive, happy times when the simple beauty of nature could make dad’s dementia an almost distant memory. Nothing really beats exploring the great outdoors with your relative, and if they love it as much as my dad did, you will be so glad that you had that experience together.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

A sensory journey

In everyday life we can often take being able to see, hear, smell, taste and touch for granted. Senses give context to the mundane, stir our emotions, affect our body language and have the power to make the ordinary, extraordinary.

Many of us will spend much of our disposable income on making our homes and our lives as appealing for our senses as possible, so it is obvious that applying that same focus to the environments and lives of people with dementia can make a huge difference to the quality and richness they find in each day.

Bland, sterile, faceless environments do not benefit people with dementia. From contrasting colours to calming music or voices, aromas that stir fond memories, favourite foods, and compassionate reassurance to alleviate anger or remove fear, the opportunities to enliven the senses to bring positive therapeutic benefits are extensive, and yet they are often not fully explored.

In some care homes sensory rooms have become very popular, not least because staff who were perhaps sceptical previously see the clear benefits on their residents' moods, emotions and wellbeing. These rooms can have a wonderfully calming effect on people who are experiencing agitation due to their dementia, and are as valuable as other standalone therapies like music (that I wrote about here) art, gardening or exercise.

Soft, possibly coloured lighting, tactile fabrics, comfy chairs, delicate aromas, relaxing sounds and, crucially, the opportunity to put the person with dementia in charge of what they do by making the room safe for them to move around and try different sensations, is a very enriching activity, particularly when enjoyed with loved ones, offering the chance for renewed family interaction and exploration.

I have visited care homes where they have interpreted the idea of sensory areas in many different ways, for example through having daylight rooms, beach rooms (complete with sand and gentle wave sounds), and sensory gardens with waterfalls and pathways that have been planted up with tactile plants and scented flowers. Conversely I have also walked down many corridors that offer no stimulation, with rooms leading off of them that are virtually identical, and people sat blankly staring into the distance while others are agitated or wandering around a seemingly never ending space that offers them nothing for their wellbeing. The difference in these atmospheres is what separates person-centred care from conveyor-belt care.

For our part, we tried to make my dad’s room a place of sensory delight. For dad, a particularly successful therapy was that of touch. Having been an active farmer all his life, his hands were desperate to be busy again, and without something to hold he was at a loss with that to do with them. Life-like miniature versions of farm animals were dad’s salvation; their soft faux-fur was perfect to stroke, and he could hold one under each arm to cuddle.

This approach was successful because not only did it solve the idle hands problem that dad was experiencing, it solved it by tapping into the touch sensation to calm and relax him. As in all things dementia related, personalisation is the key to therapeutic interventions, and this becomes even more important when the person with dementia has limited or completely non-existent use of one of more of their senses.

Dementia can create huge isolation by its very nature of putting the person with it into their own world that none of us can truly be a part of, but when someone cannot see or hear what is happening to them, who the people are around them and why they are being offered or given particular care, the world is an altogether more frightening place.

A lot of dementia training focuses on explanation and demonstration, not taking into account what happens if the person with dementia cannot benefit from that. If someone cannot see that a carer is trying to feed them, or cannot hear what the meal is and that it is now time to eat, they are likely to panic. If you were blindfolded, given ear plugs and then had someone jabbing at you with a spoon you would probably panic too. Therefore assessing someone’s sensory abilities, whether that be through checking their hearing, eyesight, ability to respond to taste (sometimes tastes need to be stronger as taste buds become duller) and smell (my father could not remember how to blow his nose for the last few years of his life, meaning that he had a permanently blocked nose and sneezed daily) is extremely important so that when it comes to touch, this is appropriate, expected and welcomed.

Touch is what ultimately brings true compassion, and can, when part of person-centred care, compensate for the deterioration of any of the other senses. Touch reminds us of how we are nurtured from birth, and for someone with dementia, those memories of being protected and loved are very empowering. Dementia is a hard road to travel, but making it a more sensory journey nurtures the person, and if there is one thing we would all like to be able to do for a loved one with dementia it would be to make life just that little bit easier for them.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook