Remuneration and reward for people affected by dementia

What to consider when you are thinking about paying or remunerating people with dementia, when you are gathering their feedback and measuring their experiences.

This is a complex area because payment for getting involved will be treated as earnings, even when retired. 

Organisations may have policies:

Why might you be thinking about making a ‘payment’ to a person affected by dementia? 

  • to ensure opportunities are open to diverse range of people, not only to people who can easily afford to fund their participation. 
  • to encourage people to get involved ('incentives').
    • Take care to avoid undermining consent
      • each person must give their consent to get involved free from duress and undue influence. This is especially important for people with dementia, who may be considered vulnerable adults.
      • incentives must not be an undue influence to get involved
        • if you are considering using a prize draw, for example, a small, low value prize, might have far less influence than a high value one. Always consider the particular people you are looking to involve to decide what's the right thing for you to do.
      • people in difficult financial circumstances should not feel they need the money so have no real option but to get, or stay, involved
  • to compensate people for their time, expenses, and inconvenience in getting involved.
    • Ethically, reimbursement of reasonable out of pocket expenses seems only fair. Many organisations may offer other 'reward' too, not always monetary.

Be clear from the start on what you can provide

For example:

  • expenses
    • travel/hotel - person with dementia and, if they prefer, a carer
    • care for dependents - remember people with dementia may be
      • parents with caring responsibilities for children
      • carers for loved ones with disabilities
  • train tickets - post / collection - find out what works best for the person getting involved
  • meeting people at destination station 
  • travelling with people
  • quiet time and space before and after involvement activity

  • refreshments and meals: People with dementia may be at higher than average risk of dehydration, and may have other disabilities such as diabetes. So there can be good reasons to provide refreshments and meals when involving them. 

  • dementia and Deaf people's experience:  this fab toolkit from Scotland has lots of great tips and insights. 

Understand why the person affected by dementia wants to get involved

Ask. Motivators might include: 

- being heard

- feeling valued/useful and not a burden

- using existing skills or developing new ones

 - being able to help other people by influencing learning from their experiences

- making sure what happened to them doesn't happen to other people

- a reference for employment or volunteering - some people with dementia do still work or volunteer and taking part in a reference or co-production group over a period of time might enable you to support them in seeking new opportunities.

- other opportunities to get involved with improving services / developing strategy

Payments to people on benefits.

If people are receiving state benefits, payments, even some reimbursement of expenses, and vouchers, could affect their benefits claim. So consider 

  • what can you pay for them such as tickets for travel, meals and hotels?
  • what non-monetary types of reward could you offer? Some people might like the chance to do training or opportunities to go on trips and attend meetings, for example.

If people are receiving benefits because health or disability reasons affect their ability to work, they should make sure that Jobcentre Plus understands that ‘involvement’ is different to employment

Really useful guide from SCIE.

What if people choose not to be paid?

It depends on their individual circumstances. It may be seen as volunteering. If someone gets Carer's Allowance, they should tell Jobcentre Plus before getting involved as a volunteer, and keep receipts for expenses to show Job Centre Plus.

Useful link about volunteering and benefits from NCVO (National Council for Voluntary Organisations)

Useful link about volunteering and benefits in Northern Ireland (NIDirect)