SCIE press release

How it feels to have dementia: New film from Social Care TV

18 September 2014

A new, brutally honest film launched today reminds us that although dementia causes the loss of some abilities, people's feelings remain intact.

Four people with dementia talk about their emotions: fear, guilt, embarrassment, isolation, powerlessness. In the film they give a deeply moving and personal insight into an often overlooked aspect of the condition. And it shows what differences can be made when there’s a supportive relationship with the person involved in dementia care.

Living with dementia has been produced by the Social Care Institute for Excellence (SCIE) to give care workers a greater understanding of the emotional impact of dementia on people – not simply the physical and cognitive impact.

And Judy, diagnosed at an early age and now in advanced stages of dementia, still knows who she is and always has been: “I know who I am. I’m the same, I’m exactly the same – it’s still me….. I used to have fun.” However, her daughter, who cares for her, says that Judy is well aware when she comes into the room.

Barry, also featured in the film, says: “I used to manage butchers’ shops; I used to drive all over the country giving lectures on meat. Now I can’t make a cup of tea.” Judy’s and Barry’s stories are good examples of how dementia is a complex issue.

It can be upsetting but the film points out that it’s important to get to know the person with advancing dementia as an individual, and to support them to maintain their own identity.

SCIE’s Chief Executive, Tony Hunter, says: ‘This is one of the most important films that SCIE has produced. At times it’s distressing to watch, but it tells it ‘warts and all’. Dementia may reduce many aspects of a person’s life - but emotions remain real. Our film shows how care workers, nurses, family and friends can support people with dementia by recognising them as individuals, with their own very real emotions and sense of identity.”

The film has been launched to coincide with World Alzheimer’s Month – September 2014

Notes to editors

What is the video about?

Four people with dementia share their insights, experiences and the challenges of living with advancing dementia. Their insights on living with dementia were filmed over time and were not always easily communicated. The film shows how supportive relationships with families, friends and professional carers can play a key role in helping people with dementia to live well.

Who will find this useful?

Care staff, social workers, care managers, carers, community nurses, nursing staff, people with dementia, people who use services, employers, trainers, families, friends and neighbours.

Key messages for practice

  1. People living with dementia can still be alert and aware of their condition
  2. It is important to know the person with advancing dementia as an individual and support them to maintain their own identity
  3. Although dementia causes the loss of some abilities, people's feelings remain intact; it is essential to empathise with people's emotions
  4. Caring and supportive relationships help people to cope with the difficult experience of living with advancing dementia.


Media contact

Steve Palmer | Press and Public Affairs Manager | Tel: 020 7766 7419 | Mob: 07739 458 192 | Email: