While there has been considerable and welcome attention in the area of dementia over recent years, the mental health of people in later life, and specifically the complex relationship between dementia and mental health problems, is a neglected area in public discourse, policy and service provision. In this paper we explore the relationship between dementia, mental health and mental health problems.
To do this, an evidence review was carried out to explore the extent that people living with dementia have co-existing mental health problems. The review initially examined the limited available literature on the incidence and experiences of comorbidity of dementia and mental health problems. Several interviews were then undertaken to get a clearer idea of the real world experiences of those working with people living with dementia and mental health problems, to help fill some of the current gaps in literature on comorbidity.
It begins with a section discussing the similarities and differences between dementia, cognitive impairment and mental health problems, followed by a section on the identification issues. We then discuss the current policy in relation to mental health and dementia, and the social and economic costs associated with both. Care, service provision and treatment methods identified through the review are then discussed, followed by gaps and resources. The review ends with some recommendations based on the findings of the review.
The main finding of this review is that comorbidities are underdiagnosed in people living with dementia, not extensively researched and therefore not understood fully. The relationship between dementia and mental health problems is not well documented, and extensive searching found relatively little literature on the challenges or experiences associated with living with this co-morbidity. There was also an overwhelming lack of literature on the care needs of those with dementia who develop a mental health problem or for those with a pre-existing mental health problem with develop dementia. This translates into a lack of understanding within service provision and an absence of specialised services for people living with both mental health problems and dementia, which was confirmed through the interviews with people working as service providers.
Based on our review of the available information, we have produced the following recommendations:
- Co-produce a mental health and dementia research programme with people with lived experience of this co-morbidity, their families and carers.
- Develop data systems to ensure mental health and dementia data can be analysed in an integrated and strategic manner to inform provision, policy and research.
- Develop policy and practice guidance on the mental health needs of people living with dementia.
- Develop relationships between mental health and dementia representative organisations and the wider disability movement; and advocate for the inclusion of people living with mental health problems and dementia within the UN review of the UK’s compliance with the Convention on the Rights of Persons with Dementia.
- Develop a rights based approach to health and social care provision for people living with mental health problems and dementia, and their families and carers.
- Develop a programme to pilot social inclusion and community based interventions, and to scale and test promising approaches.
- Develop programmes of provision, guidance, policy and research for people with early onset dementia; and scale and test promising approaches.
- Ensure that co-production principles and approaches are adopted across all provision, policy, research developments and resource the work of representative organisations such as the Dementia Engagement and Empowerment Project and the Dementia Alliance for Culture.
- Develop programmes of provision, guidance, policy and research for members of BAME communities; and scale and test promising approaches.