Dementia Disability and Hope – for family members and supporters

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 their lives more hopeful.  

It can help to look beyond the symptoms of the condition itself. Social attitudes, employment practices and the physical environment can all enable – or disable. We want to help you, and the person you support, to find solutions to the barriers which make your lives harder.  

Accepting that dementia is a disability can bring you many benefits and better support. And it can give you both hope because attitudes and environments can be changed. 

Staying hopeful 

Some people see dementia as an incurable, hopeless condition, and refer to “patients”, “sufferers”, or even “shells of their former selves”. 

But even with a diagnosis of young onset dementia, the life of the person you support can still be meaningful. With the right help and adjustments, they – and you – can continue doing what they love for longer – or even learn new things. And they have skills, life experience, wisdom and vital roles they can still 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 the medical condition, diagnosis, or functioning. The word ‘disability’ describes the social effects of the impairment. Thinking about dementia in this way may help you to focus on how the disabilities associated with the dementia connect with society, attitudes and the environment. It can help you both to recognise that you are strong, resilient and have abilities, and that you have a right to be included.  

Social barriers can cause huge distress to you as a family member/ supporter. If you can use this approach, it will help you and the person you support. By understanding that you both have rights and entitlements, you can become a stronger advocate for yourself and for them – especially if they have more advanced dementia and are less able to speak for themselves.  

Thinking about dementia as a disability may also help you to realise how many of the problems you face are external to the condition and the person you support. It can be very liberating. In addition, you as a family member can challenge discrimination ‘by association’ – which is also unlawful. 

Common barriers – and potential solutions  

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

  • Feeling pressured into leaving work. You can request an assessment and a discussion with the employer about 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 the person’s individual capabilities 
  • Being excluded from clubs or societies. Explaining and demonstrating to fellow members that the person with dementia can still take part is valuable social education 
  • Being expected to cope with environments which are overwhelming and oppressive for them because of their 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 or your family member 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 people with dementia

Information about Dementia, Disability and Hope for people who have a diagnosis of dementia

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Information for professionals

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

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Useful resources

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

 

Click here