Talking about dementia... with your employee

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 6 - 'The understanding employer'

I would venture to suggest that most employers - when questioned about their approach to an employee developing dementia - would say that they can’t cope with employing an individual should they have an official diagnosis.

A greater hammer-blow to a person with early-onset (young-onset) dementia, who may still be in full-time employment and relying on that income, is hard to imagine. It arguably ranks alongside losing your driving license as one of the most pivotally disempowering moments for a person who has developed dementia. Yet looking at each person’s situation individually, and trying to make reasonable modifications to their workload or environment, could enable an employee to continue to work for as long as possible if they want to.

Given the myth that still proliferates that dementia is a disease of ageing, many employers would potentially not think of dementia even if an employee of working age is exhibiting dementia-related symptoms. Yet with the drive to boost diagnosis rates, understanding what dementia is, and how your business could help an employee developing dementia (or indeed an employee who is a carer for an individual with dementia) will become increasingly important.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 24 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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