Involving people with dementia

1. Summary

People affected by dementia are the experts on what it is like to live with dementia.  Their expertise must inform the health and social care services that they use, the development of research that improves diagnosis, treatment and care, as well as the services and amenities that are in their local community.  

However, the views of people with dementia are often ignored. Research has found that 38 per cent of people with dementia do not have a choice about how they live their life (Alzheimer's Society, 2014). To improve this situation, barriers must be removed in particular the widespread belief that a person with dementia cannot be involved in decisions or give their opinions. Alzheimer's Society works to combat stigma about dementia and calls for other organisations to help people with dementia make everyday choices.

2. Alzheimer's Society calls for:

  • Personal budgets. Attitudes of health and social care professionals are a barrier to personal budgets for people with dementia, in particular direct payments. It is vital that the understanding and knowledge of professionals regarding the inclusion of people with dementia and carers in the personal budgets system is improved. In England, Alzheimer’s Society welcomes the Health and Social Care Act’s stated preference for direct payments and will campaign for provisions that encourage local authorities to improve practice in this area to be strengthened. In cases where a personal budget is not suitable, people with dementia and carers should be given choice and control over services based on the principles of the Mental Capacity Act
  • Planning for end of life. People with dementia should be involved in decisions about end of life care wherever possible. To achieve this, advanced planning is vital as a person’s capacity to make decisions may be lost as their dementia advances. People with dementia should be supported to use their rights, under the Mental Capacity Act in England and Wales, to identify whom they want to make decisions and any treatments they would not want. In Northern Ireland, the Assembly is developing mental capacity legislation to be introduced in 2015.
  • Regulation of health and social care services. People who use services are the experts in how a service addresses their needs. Regulators should work with people with dementia to develop performance standards and assess care quality. In addition, regulators should encourage service users to provide feedback about service quality on an on-going basis to the regulator or other organisations such as Healthwatch in England.
  • Commissioning of health and social care services. The NHS Constitution (Department of Health, 2013a) states that patients and the public have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies. In addition, the Health and Social care Act requires councils and Clinical Commissioning Groups to involve local people in preparing their plans for local health and social care services, called Joint Strategic Needs Assessments. Alzheimer’s Society believes that, if local services are to be high quality, effective and efficient, it is vital that people with dementia are fully engaged.
  • Public policy. People affected by dementia have been involved in developing national policy, such as sitting on the working groups that developed the National Dementia Strategy for England and the NICE/SCIE dementia clinical guideline. Alzheimer's Society believes that this involvement is fundamental to developing meaningful policies for people with dementia.
  • Development of assistive technology. People with dementia have a significant contribution to make to the development of innovative new technologies that can enhance independence and quality of life. Alzheimer’s Society campaigns for manufacturers to involve people with dementia in research and development of assistive technologies.
  • Clinical trials.  Currently less than 4% of people with a diagnosis of dementia are involved in a clinical research study (Alzheimer’s Society, 2014). To help increase this number, the opportunity to participate in research will be one of the conditions for accreditation of memory services through the Memory Services National Accreditation Programme (MSNAP). In addition, both Alzheimer’s Society and Alzheimer’s Research UK (ARUK) are working with the National Institute for Health Research (NIHR) to launch a new service called Join Dementia Research that allows people to register their interest in participating in dementia research.
  • Research design and the research process. Over 15 years, Alzheimer's Society has shown that people with dementia and their carers can make a unique and valuable contribution to dementia research. To achieve this, Alzheimer’s Society’s Research Network works with a team of over 250 carers, former carers and people with dementia to shape our research at all stages.
  • Alzheimer's Society. Alzheimer's Society believes that its work should always informed by the needs and experiences of people affected by dementia. We seek to actively engage people affected by dementia in influencing all aspects of the Society's work. We do this in many ways, from asking people for feedback on our services to influencing the future direction of the Society. This has significant benefits for the organisation.

3. References and further information

Alzheimer's Society advice sheet, Understanding and respecting the person with dementia

Alzheimer's Society web page, Sharing your experience

Alzheimer's Society (2013), Guidance and criteria for the recognition process for dementia-friendly communities

Alzheimer's Society (2014), Dementia 2014: opportunity for change 

Last updated: October 2014 by Laurence Thraves

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