Dementia and Hope – for professionals

Dementia 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.  It helps to look beyond the condition itself and its symptoms. Social attitudes and ignorance, employment practices and the physical environment can all be very disabling. We want to help you, as an experienced professional, to find solutions to these barriers. 

Staying hopeful 

It is not helpful to talk about dementia as an incurable, hopeless illness, or refer to people as “patients”, “sufferers”, or even “shells of their former selves”. Far better to focus on the fact that life between the time of diagnosis and the end can still be meaningful.   

If you offer the right support and adjustments, people with young onset dementia can keep doing what they love doing for longer – and even learn new things. And they can still contribute their skills, life experience, wisdom and vital roles to society – whether as a partner, parent, family member, friend, employee or volunteer. This also brings significant benefits to their family. 

Dementia, disability and equality law 

In law, dementia is classed as a disability – and, disabled or not, we all have rights. Recognising this can empower, and give hope to, people who are affected by young onset dementia. The requirement to make ‘reasonable adjustments’ for people with disabilities is already enshrined in equality law – but it is often overlooked. Applying ‘reasonable adjustments’ is simply about enabling equity or parity for younger people with dementia – so that they can access everything that others access. 

Even if people with young onset dementia don’t identify as disabled – they may not want that label – you can still use equality law to help them get what they need to live a fulfilling life. Areas commonly requiring adjustments for people affected by young onset dementia include: 

• Pressure to leave work, without an assessment or discussion about reasonable adjustments – you can help them request this from their employer 
• Denial of rehabilitation, counselling or help to adapt to their condition – you can help them challenge this 
• Environments which are overwhelming, inaccessible, and oppressive – you can help them to identify what changes they need  
• Information and communications – these often need to be simpler, more accessible and more personalised  

The PANEL principles 

Putting this focus into practice is called a human rights-based approach.  The PANEL principles help us to understand what this approach means in practice. PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.  

The PANEL principles could be a useful tool for you in reviewing your practice, and in making legal principles useful to you. They can help you better understand the legal rights of the people you support so you can then help them to request the adaptations and changes they need in order to live better lives. 

We encourage you to share the Dementia and Hope vision and to actively embed it into your work. We hope that the following resources and organisations will help you to do this, click here.  

You can download a copy of the Dementia and Hope publication here.