1. The problem: what our investigation found
If you were diagnosed with dementia today would you want to stay in your own home for as long as possible or move into a care home? Either way this decision should be up to you.
But poor homecare, due to lack of dementia training, means for many people this isn't happening. People told us of shocking examples where loved ones had not been helped to wash in weeks, been left without essential medication or ended up in hospital as homecare workers had missed infections. Our investigation found cases of the person with dementia being treated like a child or being ignored completely and made to feel they were little more than an object.
Right now, there are 400,000 people with dementia receiving care at home. However one in three homecare workers have been given no dementia training at all.
This is not acceptable for people with dementia: 'They do not have enough knowledge about the illness to be comfortable to talk to me as a person'*
This is not acceptable for their family carers: 'Most were unable to deal with challenging behaviour and as a result left mum soiled and dirty rather than learn how to manage her'*
This is not acceptable for homecare workers: 'I have been assaulted while working because I didn't understand how to deal with the person with dementia'*
Imagine not recognising a homecare worker who was trying to shower you. Now imagine how you would feel if that person was unsure of how to calm you and eventually stops trying and leaves you in soiled clothes...
Imagine barricading yourself in your kitchen because you were terrified of the care worker or not being able to communicate if you had eaten already or were still hungry so that you were left to live on biscuits and cold food...
We know that the majority of homecare workers are doing the best they can and care about the people they visit. The sad reality is that they are not getting dementia training that is appropriate and are being sent into people's homes without enough knowledge about dementia and how to take care of the person with dementia.
Homecare workers delivering care in the community need to understand the specific complexities of dementia and be equipped through appropriate training to know how best to respond, just as we would expect NHS professionals providing care for diabetes or cancer to understand the disease.
*Quotes taken from our investigation, we surveyed over 1,200 people affected by dementia in Summer/Autumn 2016
We know good homecare exists and that it can make a difference in people's lives. Call on the Government to fix this broken system.