Remuneration and reward for participants with dementia

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

Organisations may have policies:

• for public or service user involvement
• for paid roles such as experts by experience.

Benefits of remuneration

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/incentivise people to get 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.

Concerns associated with remuneration

• There is a danger that remuneration and reward can undermine 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 that they have no real option but to get or stay involved in the project. 
   

Be clear from the start on what you can provide

• Expenses, covering travel and/or a hotel for a person with dementia and, if they prefer, a carer.
• Care for dependents. Remember, people with dementia may be parents or carers with responsibilities.
• Train tickets. Find out what works best for the person getting involved. Are they travelling alone, do they need someone to meet them at the destination station? 
• 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. 
• Additional support for Deaf people. This fab toolkit from Scotland has lots of great tips and insights. 

Understand why the person affected by dementia wants to get involved

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
• other opportunities to get involved with improving services/ developing strategy
• 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.

Payments to people on benefits.

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

Consider what you can pay for them, such as tickets for travel, meals and hotels. Some people might appreciate non-monetary rewards, such as the chance to do training or opportunities to go on trips and attend meetings.

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.

We recommend this useful guide from SCIE.