Dementia, Disability and Hope – for people with young onset dementia

Dementia, Disability and Hope is a vision created with, and for, people who are living with dementia.

There are things we can all do to make people’s lives more hopeful.  We believe it helps to look beyond the condition itself and its symptoms. Social attitudes and ignorance can disable you. You can also be disabled by how your employer behaves and by the physical environment.  

We want to help you find solutions to barriers like these. Accepting that dementia is a disability can bring you many benefits and better support. And it can give you hope because attitudes and environments can be changed. 

Staying hopeful 

Some people think and talk about dementia as an incurable, hopeless illness. We hear people with dementia referred to as “patients”, “sufferers”, or even “shells of their former selves”. 

But even with a diagnosis of young onset dementia, your life can still be meaningful. With the right support and adjustments, you can continue doing what you love for longer – or even learn new things. And you still have skills, life experience, wisdom and vital roles to contribute, whether as a partner, parent, family member, friend, employee or volunteer. 

The social model of disability

The social model of disability can help us to look at dementia in a different way. In the model, the word ‘impairment’ is used to mean your medical condition, diagnosis, or how you function. The word ‘disability’ describes the social effects of your impairment.  

Thinking about dementia in this way may help you to focus on how the disabilities associated with your dementia connect with society, attitudes and the environment. It can help you to recognise that your life is meaningful, has purpose and you still have abilities, and a right to be included.  

Dementia, disability and equality law 

All of us, disabled or not, have rights. In equality law, dementia is classed as a disability. The requirement to make ‘reasonable adjustments’ to help you is already enshrined in equality law – but it is often overlooked. Requesting ‘reasonable adjustments’ is simply about seeking equity or parity with other people. 

It doesn’t matter whether or not you identify yourself as disabled; you may not want that label. But you can still use equality law to help you get what you need to live a fulfilling life. Recognising this can empower and give hope to you and your family/supporters. 

Common barriers – and potential solutions  

Here are some examples of obstacles you may experience – and some possible solutions based on equality law:  

  • Feeling pressured into leaving work. You can request an assessment and ask your employer to make reasonable adjustments, such as working fewer hours or in a less demanding role 
  • Feeling pressured into giving up driving. You can insist on an assessment of your individual capabilities 
  • Not being offered – or being denied – rehabilitation, counselling or help to adapt to your condition. You can request an assessment of your individual needs, not based solely on the fact that you have dementia 
  • Being excluded from clubs or societies. You can educate fellow members by explaining and demonstrating that you can still take part if they help by accommodating your needs 
  • Being expected to cope with environments which are overwhelming and oppressive for you because of your dementia. You can request adjustments such as less noise, better lighting or clearer signage 

Understanding your rights and how to ask for the adjustments and support you are entitled could be life changing both for you and for others. So, we encourage you to share the Dementia, Disability and Hope vision and to actively embed it into your life. We hope that the following resources and organisations will help you to do this. 

You can download a copy of our Dementia, Disability and Hope leaflet for people affected by young onset dementia here. 

Information for family members

Information about Dementia, Disability and Hope for family members and supporters of people living with dementia

Click here

Information for professionals

Information about Dementia, Disability and Hope for health, social care and voluntary sector staff

Click here

Useful resources

We have created a collection of dementia-related rights and advocacy related resources

 

Click here