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Best practices for working with people with dementia

As people live and work longer, working with people with dementia will become more commonplace. Here we explain how agreed ways of working uphold the rights of an individual with dementia.

If you know anyone who has ever suffered from dementia, you’ll know how hard it is. For tradespeople, working with people with dementia can sometimes be as challenging as living with the condition.

We talked to Alzheimer’s Society, the foremost charity working with affected by dementia. They provide important support and guidance, and we asked for their insight into what it means for the workplace.

Cases of dementia are increasing

A report from 2019 showed that there were around 900,000 people with dementia in the UK. More and more people are diagnosed every year, and that figure is estimated to rise to as many as 1.6 million by 2040.

There are also more than 70,000 people under the age of 65 living in the UK with young-onset dementia. That is the name given to the disease when it comes on earlier in life. Young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance.

With so many people in the UK affected, and as retirement age rises, there will be more and more people working with dementia.

As tradespeople, working on jobs can often be very detailed, or very physical. You want to do the best job for your customers. That means it is very important to know how to spot the symptoms and know how to respond if you or your employees get diagnosed with the condition.

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What are the different types of dementia?

Various factors contribute to the development of dementia. The condition is sadly progressive and irreversible.

There are many types of dementia and they feature the loss of some brain function. Unfortunately, there is currently no cure for any form of dementia.

Rather than one specific illness, dementia is a condition that has many types. These include:

  • Alzheimer’s disease
  • Frontotemporal dementia
  • Lewy body dementia
  • Vascular dementia
  • Young-onset dementia
  • Mixed dementia

About 1 in 20 people that have dementia have a rarer type of the condition. A person with a rarer type of dementia might have different symptoms, particularly during the early stages of the condition.

Nowadays, much more is known about the different types of dementia, how they progress, and how people can help. One of the key ways is to be patient and you may need to communicate differently.

Is it hard working with people with dementia?

Dementia is an illness that affects people in different ways. That means you have to treat everyone individually on a case-by-case basis.

Every type of dementia manifests differently, and symptoms will appear and develop at different rates. That means that it is important for people with the condition to be open about how they are affected. That means that workplaces can adapt to the “new normal” presented by the condition.

Here are some of the ways in which people can be affected:

  • Memory loss
  • Poor judgement
  • Confusion
  • Difficulty speaking
  • Acting impulsively
  • Taking longer than usual to complete normal tasks
  • Some experience loss of balance or problems with movement

When it is an employee working for you, it is important to try and record possible signs or symptoms of dementia as they progress. Knowing more about how certain tasks or processes are affecting them will help your business stay in line with agreed ways of working.

For example, without being patronising, you may need to speak slower, to allow more time for the person to process what you are saying. This is one of the many simple ways that reasonable adjustments can be made.

Sometimes a change is slow

As with every other medical condition, there is no legal reason for treating someone worse because they have dementia. It is a degenerative condition, so eventually people will no longer be suitable for employment.

But in the meantime, working with someone with dementia means understanding and adapting. It also means getting a better work-life balance for the person affected.

However, if you are a business owner, you want the right balance. That is hard to get right when it comes to working with people with dementia. You want to look after your employees without the quality of your work being affected.

How the law protects people working with dementia

The Equality Act 2010 protects people from discrimination in the workplace and in wider society.

That means as a trade business, you’ll need to make reasonable adjustments for people with dementia first, rather than firing them outright. Such an action could be considered unreasonable grounds for dismissal, and you could face legal action.

However, you will need to make a difficult judgement call down the line. If it is not safe for the person to keep working, then they may need to change roles or think about working somewhere else.

There are challenges presented as a tradesperson that may not be an issue for someone in an office. When it comes to working with dementia, environment can also play a part.

That could mean:

  • Climbing scaffolding as roofers
  • Navigating complex electrical boards
  • Working with highly flammable gas as an engineer.

Quoted on the Alzheimers Society website, guidance from the Equality and Human Rights Commission says:

“If you are being dismissed on the grounds of capability, this should only be done following careful discussion, expert advice and research of all possible reasonable adjustments. It may be more appropriate to offer to move a disabled person to a different role than to dismiss on the grounds of capability”.

 Let’s be clear, while you may need to adapt your processes when working with someone with dementia, it is a lot harder for the person themselves.

All people should be treated equally. In the workplace, people with dementia are protected from unfair dismissal, so as a trade business, you need to look at ways to adapt and help anyone who has the condition.

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What reasonable adjustments can your trade business make?

Many people are able to carry on working for a time with dementia. Some changes may need to occur, but helpful routines and repeated tasks may help the person keep working for longer.

Agreed ways of working uphold the rights of an individual with dementia. That means trying to make adjustments and bear with them. More patience may be needed.

As an employer, you have a duty to make sure that work is carried out. But you also have a duty of care for your employees. So when someone is suffering from a condition like dementia, a degree of compassion and understanding is mandatory.

Here are some things to consider when working with someone with dementia:

  • Depends on the nature of your work or trade
  • Extra time may be needed
  • Tasks may need to change
  • Different tools may be required
  • Dementia is not “being difficult” – it is a serious medical condition
  • Showing compassion is more appreciated than you know

Be aware though, that as dementia is a progressive condition, eventually a time will come when that person can no longer keep working.

That will be a difficult time for the person and their family. It will also affect your business. So as soon as you are aware of their (or your) diagnosis, planning ahead is important. Even without specific timescales.

What are positive approaches for working with an individual with dementia?

People that have been diagnosed need to be upfront about their condition. Like with any illness that could affect work, dementia should be declared to an employer.

But how can working with a positive attitude help someone with dementia?

Using words that label, belittle or depersonalise people that have dementia can have a big impact on them and their families. It shapes mood, feeling, self-esteem and can increase the likelihood of stigma surrounding the condition.

On the flip side, using positive language helps give people dignity, respect and makes them feel valued.

Here are some key steps to follow:

  • The person is more than their condition
  • Revisit familiar stories and phrases
  • Focus on what people can do, and not what they can’t
  • Ask yourself how you would feel in their position
  • Remember it is a life-changing and stressful condition

Again, Alzheimer’s Society have put together a useful guide about the impacts that using positive language can have. You can download the full PDF by visiting here.

What do you do if you’re working with dementia yourself?

As dementia is a progressive condition, there will likely come a time when continuing to work is no longer possible. If you’re working for someone else and have dementia, you need to let your employer know.

Your business should make reasonable adjustments to facilitate your change to this new chapter.

Alzheimer’s Society has produced a useful booklet about employment and dementia which goes through some of the things to think about if you have been diagnosed while working. It also has some suggestions for where you can get advice and support. You can find it here.

If you are a self-employed person, a degenerative illness becomes more of a challenge. Without the support of a business structure, things like statutory sick pay may not be available to you. But there are benefits like Personal Independence Payments (PIP) which may help. Alzheimer’s Society has information on benefits that may be available for people with dementia here.

There are support structures, but you may need to speak at length with medical professionals about the severity of your condition, any prognoses, and projected timelines.

If you have dementia yourself, it is important to get a support network. As well as friends and family, there are people such as Alzheimer’s Society who will be able to help you adjust.

At Checkatrade, we care about putting homeowners in touch with quality trades. We want to support our members wherever possible, and sometimes that means giving guidance at difficult times. Remember to contact our Membership Advice team if you get a diagnosis, to share what this means for you, and we’ll see how we can help.

How can Alzheimer’s Society help?

We asked Head of Knowledge at Alzheimer’s Society, Dr Tim Beanland, for his thoughts:

“Currently, dementia is the UK’s biggest killer, with one in three people born in the UK today going on to develop it in their lifetime.  But right now, there are thousands of people who are in the dark about their diagnosis – they may not know what signs to spot, or are just too afraid to visit their GP. It has never been more important be aware of the signs of dementia and face it head-on.”

Alzheimer’s Society has developed a symptoms checklist, which supports people worried about their own or their loved one’s memory to describe the symptoms they’ve been experiencing to a healthcare professional or GP.

“Acknowledging the symptoms you’ve been experiencing to a healthcare professional is the first step in getting clarity. A timely diagnosis of dementia is key – helping families plan for the future and unlocking the door to care, treatments and vital support. It really is better to know – from a recent survey, Alzheimer’s Society found that 91% of people with dementia benefitted from getting a diagnosis.”

No-one should have to face dementia alone. Alzheimer’s Society provides help and hope to everyone living with dementia, funding vital research and supporting people through some of the toughest and most frightening times.

To find out more about Alzheimer’s Society and how they may be able to help, visit alzheimers.org.uk or call the Dementia Support Line on 0333 150 3456.

 

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