Does the world really stop?

There is a prevailing view that when someone is told that they have dementia, everything in their life must stop. If they were working or studying that must stop. They must stop driving. They stop being spoken to and start being spoken about. They stop being given tasks to do, or even being allowed to complete simple tasks that they feel comfortable tackling.

Any deviation from this is considered to be a lack of compliance, but since when did people with dementia have to become compliant? Being told you have a terminal illness is likely to make most people want to become as incompliant as possible. A diagnosis of many other terminal illnesses is often associated with the formation of a bucket list, a compendium of all the things someone wants to achieve, all the places they want to visit and all the people they want to meet. Not with dementia though.

We expect people with dementia to just crawl home and stay there until potentially a medical emergency brings them into contact with their local hospital. Then they will encounter the giant beast that is healthcare, followed by social care, followed by huge confusion and frustration for a person who is likely to already be hugely confused and frustrated due to their dementia.

So is this mismanagement on a grand scale or just a fact of life? Personally I don’t think this reality is right for anyone. No one is likely to live well with dementia if their life is reduced to a model of isolated dependence, where joy and happiness is in short supply and irritation and depression are the daily norm.

I’ve written previously about the need for everyone with dementia to be given the opportunity to achieve, and that can be achievement at every stage of dementia. You may associate achievement with hitting huge milestones and pushing yourself to extremes – for someone with dementia it may be something as simple as making a cup of tea or buttering some bread, but it’s achievement, it is an element of self-sustainability and it’s priceless.

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

He did, in fact, have quality of life, just not what most people with limited understanding of dementia perceive to be quality of life. He enjoyed his food and had an amazing appetite. He loved listening to music and would sing along. He rested peacefully and relaxed with simple pleasures. He looked forward to going outside and would snooze in the sun under his panama hat. He was emotionally alert and showed that when he saw the people he cared about. He was loved and showed love to those he cared for. All of these things represent quality of life.

My dad had that, however, in spite of the systems that try to wrench this away from people with dementia. Systems that want to dehumanise and disempower people with dementia, pretty much from the earliest point in their dementia to their last breaths at the end of their life. My dad had quality of life because he had a family. How many people don’t have an actively involved family or indeed any family at all? Relatives have been known to run for the hills when they hear that a member of their family had developed dementia (some fearing that it is, in fact, contagious).

My dad’s world could easily have stopped. I’m sure on some days it did, no one in our family would claim to be a superman or woman – none of us were capable of removing every negative feeling and experience from the life of my dad, however much we tried. That is, however, the point: we did at least try.

For us the world didn’t stop, it kept on turning. Yes it was different, but life doesn’t stand still. It can happen around a person with dementia, or we can all make a conscious decision to ensure that person is part of their world. Indeed, to give someone the best chance of living well with dementia nothing needs to ever really stop. Yes they may not be able to carry on with a particular type of work or hobby, but there is no reason not to try something else that they enjoy, or indeed something new.

If paid employment is out of the question, volunteer, campaign and spread the word. Talk about your experiences; I guarantee that there will be people who want to hear about them – I definitely do. Driving a car may not be possible, but look into every other form of transport and make sure that you are getting out and about regularly. Tasks may need some supervision occasionally, but as observers we should never jump in to ‘correct’ unless it is absolutely necessary to prevent harm. It’s ok to do things ‘wrong’ – it’s better to have tried, experimented and come up with something unique, than to have sat back and decided that you can never do anything ever again and it’s time to just give up and admit dementia has won.

Throughout history the most innovative people have often been incompliant – the mainstream wasn’t for them, and they set about putting their own mark on the world. In many ways, I’m hugely incompliant and actually proud of it. Facing up to a future with dementia may be terrifying, but let it also be liberating. Make your bucket list and don’t let your world stop – it’s far harder to start again than it is to just keep going.

Until next time...

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Risk verses reward

I’m not quite sure when it happened, but it seems that wrapping human beings up in cotton wool has become a habit that many individuals and organisations are struggling to get out of. Prime candidates for this approach are anyone who is older and considered to be vulnerable through their health or circumstances. For anyone who falls into this category, the cotton wool approach is likely to become the standard response to ‘caring’ for you.

In the UK, and I’m sure further afield too, we have become very risk adverse. Since just about everything in life has some risk attached to it, it seems that a return to the womb may be the only option to ensure we remain truly safe. With reverse births yet to be pioneered, however, perhaps it is worth proposing an alternative approach – let’s put risk back into living, mainly because life without it really isn’t life at all.

I’m all for ensuring that people with frailties are cared for with due recognition of what is making them more fragile, but risk aversion has gone too far. In many health and care settings, people are expected to remain seated or in bed because of the risk of falls, even though many are capable of being more mobile and would benefit from being so, not least in reducing the instances of pressure sores and infections.

I’ve seen food and drinks left out of reach of people until they are cold, simply because of the risk that these items could prove to be too warm to consume. Personally I am not a fan of cold tea or coffee, so taking this approach with me certainly wouldn’t encourage me to keep hydrated. Doors to the outside are kept locked because of the risks associated with going outside – getting burnt in the sun, catching a chill in the cooler weather or getting wet, despite the fact that sun cream and clothing are readily available to prevent all of these eventualities.

You can take it further too. Banning animal therapy because of the risk of spreading diseases. Avoiding arts and crafts because of the risk that paint or other substances could be ingested. Preventing someone from making their own drink or preparing a simple meal because of the risk that they might burn or cut themselves. Banning gardening in case someone over-stretches themselves with a task, or eats something they shouldn’t. Only allowing people to bath or shower when absolutely necessary because of the risk of them slipping when they are wet and soapy.

The list is endless, the point is that taking away risk means basically condemning someone who has needs, capabilities, wants and desires to a vegetative state that isn’t of their making. I have written previously about the need we all have for a sense of achievement, but this can only come from allowing us some risk in our lives. Letting people do as much as they are able to, and supporting them to excel and potentially push themselves even further, can be frightening but also very rewarding for them and for the professionals caring for them when they do something that they were never considered able to do.

The compromise is to manage risk. You wouldn’t necessarily help someone with a heart condition to go bungee jumping, but you could help them to go outside and sit in a swing in the sunshine. You would be irresponsible to leave a person with advancing dementia alone in a kitchen with numerous safety hazards, but you could be there with them and help them to make themselves tea and toast for breakfast. Indeed many activities that are considered risky can have their risk reduced through supervision and assistance.

Allowing the people we care for and love to have some risk in their life isn’t easy. We want to keep them safe, protecting them from all harm or potential for pain or upset. But it can never be considered good practice to become so risk adverse that you order those in your care to remain seated or in bed, thus condemning them to losing the use of their legs. Many people become more unsteady on their feet in later life, and especially when they are living with dementia, but numerous mobility aids exists to support someone to move around, and certainly in my dad’s case, items like hip protectors were also very helpful.

Sometimes I think care providers lose bravery. Away from their jobs, they can still go and have adventures and try new, exciting and sometimes scary things. It’s easy to forget that those needing their care are no different in wanting that feeling of the wind in their hair, the taste on their lips or the smile that comes from achievement. We hate the idea of losing our own independence, but by become risk adverse in our professional lives, we automatically deny the opportunity to experience the unexpected to those we are charged with caring for.

So next time you see risk, make sure you are also seeing the person. Ask yourself these questions:

1. Are you really protecting the person, or are you actually more concerned about protecting yourself? 
2. Are you guilty of seeing too many situations as risky, when in actual fact the risk is far more minimal than you realise, or could be virtually eliminated? 
3. Can you find a way to enable someone you are supporting to do something that they want to do rather than just dismissing it as too risky?
4. Finally, can you build more proactive risk taking into the daily life of the people you support so that they are actually living and not just waiting to die? 

Until next time...

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A sense of achievement

One of the most pervasive beliefs about dementia is that people living with it cannot achieve anything. For many the onset of living with dementia can signal the end of aspects of their life that represent the very foundations of their existence, and the consequences of that can have a very negative effect on their health and wellbeing.

If you are a younger person who is still in active employment it can mean the end of that way of life, regardless of whether you wish to continue working in some capacity or not. For someone like my father, diagnosed much later in life after a crisis point, it can mean the end of living independently and an unavoidable move into a care home.

In both scenarios, loss of independence, purpose and the chance to achieve something every day can be devastating. If someone is able to remain involved in engaging, stimulating and worthwhile work, it can have a very positive therapeutic effect that will help to alleviate their dementia symptoms . The minute someone feels condemned to being no longer useful, and potentially just sits in front of a television all day, hardly moving, not needing to process information or problem solve, more rapid and extensive brain deterioration is highly likely. Daytime TV isn’t considered to be mind-numbing for no reason!

Likewise, being forced through your current symptoms to move into a care home, leaving behind the familiarity of your own home, your comforts and most of your possessions can again often bring about a significant deterioration. In my father’s case, his care home never offered him the chance to do meaningful and worthwhile tasks that could have improved his experience of care in those early years. Even something as simple as gardening could have made a world of difference to his quality of life and sense of achievement.

You could argue that an element of personal responsibility comes into play when looking at your own quality of life, but in the case of someone with dementia, the way in which the disease robs a person of that previously assumed ability to control their life complicates issues of personal responsibility immensely. In an ideal world we motivate ourselves and seek out opportunities, but that is often easier said than done when living with dementia means that doors are slammed in your face.

Unlike the support given to many disabled people, people with dementia do not routinely get offered help to enable them to remain in active employment for longer, or in some cases, even remain in their own home for longer. Yet we know that people with dementia do still want to achieve in everyday life, and most would much rather live in their own home than in a communal establishment.

Retaining independence is something most people guard fiercely. More often than not in the earlier stages of the disease, it isn’t the dementia itself that will rob someone of that independence, it is often the attitudes of society and the care and support systems we have (or don’t have!) that manage to do that.

For example, if employment becomes too problematic, or indeed someone is already retired, access to voluntary work can become a lifeline. For however long someone is able to do something, even if their support needs increase, they should be enabled to do that. Assistive technology, support workers or mentoring, memory triggers, flexibility and careful planning of each day can all help in supporting someone with dementia to continue to achieve and contribute to society.

Many of the things needed to enable someone to remain actively engaged in some form of work can also help to keep them living in their own home for longer too. Again the key here is support. Holistic family support is vital where a family are the main care providers, and where someone lives alone, a support package that focuses on keeping them as independent and safe as possible must be active and constantly reviewed.

It can be a very difficult juggling act, not least because much of the support that people with dementia and their families need relies on health and social care working together, which as we all know isn’t the norm. Often people find themselves at a crisis point, whereby either a carer can no longer cope or the person needing care has deteriorated to a point where they are admitted to hospital. If they cannot return to their own home for whatever reason, it is then vital that they have the chance to move into a care home that will support them as much as possible in a partnership of doing things WITH them, not just FOR them.

I want care providers to embrace seeing the people who come to live within their community as participants in the daily running of that community, not just as someone there to receive a service. What achievement means in practical terms for each resident in a care home can vary immensely, but here are some classic examples:

• Allowing a previously dedicated housewife to become actively involved in household tasks like folding washing, dusting or polishing cutlery.
• Helping an avid cook to make simple meals.
• Assisting the perfect hostess to serve tea and cakes to her guests or fellow residents.
• Providing a gardener with a piece of land, tools and plants to grow favourite food or flowers.
• Offering a retired secretary the chance to help with stuffing mailshots into envelopes or putting stamps onto letters.
• Helping a retired postman to distribute the mail around the home.
• Giving an animal lover pet grooming tasks.
• Offering a music or drama performer the chance to entertain everyone.

The list is endless and of course specific to an individual’s background and hobbies, but the point is that all of these tasks can give a person a sense of achievement. We must never lose sight of the need we all have to feel  that we have achieved something, and in the case of someone who is living with dementia, be mindful that achievement is a key component of living well with dementia.

Until next time...

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Let's talk about dementia - Surprises

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 3 - Prepare to be surprised

Ask most people what they think living with dementia would be like, and they assume it’s a life of inability and dependence. Those of us who know otherwise just want to scream, “People with dementia can still do things!”

More importantly, people with dementia still WANT to do things. Stepping in and doing everything for them, without stopping to consider, asking or trying to see what they can do themselves removes their independence, and is actually likely to make their deterioration with dementia more rapid.

An example of this is my dad in the later stages of his dementia. To a casual observer he was incapable of doing anything. Most days he needed to be helped to eat, but some days he could, when encouraged and not rushed, pick up the spoon and feed himself. You might think, what’s the point? Just do it for him. But by doing it himself he proved that not only did he have the ability and dexterity, but most importantly of all, he had the desire to fuel his body to keep going.

So next time you are with someone who has dementia, give them the opportunity to surprise you. Allow them to experience achievement, and when you talk to them, let them know the joy of being praised.

Next post on 22 May 2013.
Until then...

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