This document summarizes a report on addressing equality issues for groups with protected characteristics experiencing dementia in Scotland. It finds that diagnosis and care pathways must be modified to meet varied needs. Key recommendations include continuing efforts to raise culturally-sensitive awareness of dementia, ensuring clear support services, providing workforce training on individualized care, and further research on improving awareness and data collection for underserved groups.

1. Dementia and equality:
Meeting the challenge in Scotland
Recommendations of the National Advisory Group
on Dementia and Equality
Michael Tornow
Senior Health Improvement Officer
Public Service Reform
NHS Health Scotland
Michael.tornow@nhs.net
‘Dementia and Equality: meeting the challenge in Scotland’ at
http://www.healthscotland.scot/publications/dementia-and-
equality-meeting-the-challenge-in-scotland

2. Dementia statistics
Data on the prevalence of dementia shows variations by protected
characteristics:
• Gender - 67% of people with dementia are women, most likely because
women live longer than men.
• Age - dementia risk increases with age. Estimated prevalence rates increase
from 0.1% of people under the age of 64 years to 15.9% of people aged over
80 years.
• Learning disability - dementia rates are higher amongst people with a learning
disability and onset is often younger. Up to 75% of people with Down's
Syndrome over the age of 50 years of age develop dementia.
• Ethnicity - the estimated prevalence rates for dementia in the black and ethnic
minority community are similar to the rest of the population with the
exception of early on-set (presenting before 65 years) and vascular dementia
which have been found to be more prevalent.

3. Rationale for the Dementia and
Equality report
Scotland’s National Dementia Strategy 2013-16 Dementia Strategy
recognised that certain population groups experienced dementia
differently to the general population.
Commitment 16 of the strategy, states: ‘We will undertake a brief piece
of work focusing on the care pathway for these groups, through
diagnosis and support, through treatment and care, taking account of
the particular challenges for carers and family members with the
objective of identifying what further actions are required to ensure that
each of the key improvement areas – diagnosis, post-diagnostic
support, care coordination – requires modification to take account of
the needs of different groups.’

4. Rationale for the Dementia and
Equality report
Dementia practitioner:
“I was very aware that certain populations were rarely
seen at our clinics, and that when people from these
groups did come to us, we were often unable to meet
their needs in terms of providing services comparable
to those provided to others.”

5. Equality Act 2010 - protected
characteristic population groups with
issues around dementia
The Dementia and Equality report focused on the issues with dementia
experienced by population groups with protected characteristics under the
Equality Act 2010. These groups of people are as follows:
• Age-younger people with earlier onset dementia (under the age of 65
years).
• Race and ethnicity – black or minority ethnic (BME) people.
• Disability-people with learning disabilities.
• Disability-people with sensory impairments.
• Sexual orientation-lesbian, gay, bisexual (LGB) people.
• Gender reassignment-transgender people.

6. Dementia and Equality outputs
• Literature review published June 2015
• Engagement with communities, process and
report to inform recommendations, September
2015
• Dementia and Equality: meeting the challenge in
Scotland report published August 2016

7. Literature review
The literature review revealed:
• Lack of evidence of effective interventions that raised
awareness of dementia in different population groups.
• Limited information about beliefs about dementia and
attitudes to help-seeking.
• Published research limited to small locally based studies-
most of which were undertaken in the USA.

8. Recommendations
The Dementia and Equality: meeting the
challenge in Scotland report contains over 50
specific recommended actions, however there
are four key overarching recommendations for
promoting equitable dementia services that
embed and promote human rights.

9. Recommendation 1
Continue to raise awareness
This is fundamental to promoting early diagnosis. Further research and
development work is needed to develop culturally sensitive information
about dementia and available services and to establish the most
effective ways of raising awareness of dementia. This includes using
appropriate terms, recognising that the word dementia does not
translate into all languages or that it may not have meaning to a person
with a learning disability.
Community connections, and the support of family and friends, need to
be targeted as a key resource for both tackling stigma and encouraging
early diagnosis and increasing quality of life within the community post
diagnosis.

10. Recommendation 2
Ensure robust services and support pathways
There is a need to continue to ensure clearly
signposted, robust, culturally competent, locally
informed services and post-diagnostic support
pathways.

11. Recommendation 3
Ensure appropriate knowledge and skills.
Essential to encouraging early help-seeking among different population groups with
protected characteristics, and to providing a supportive post-diagnostic pathway, is:
The need for an individualised care approach that recognises all aspects of an
individual’s identity, such as age, disability, race, religion and sexual/gender identity.
NHS Education for Scotland (NES) and the Scottish Social Services Council’s (SSSC)
‘Promoting Excellence: A framework for all health and social services staff working
with people with dementia, their families and carers’ outlines the knowledge and skills,
behaviours and attitudes the workforce needs in order to provide this type of service,
linked to quality of life outcome indicators and stages of the dementia journey.
The Promoting Excellence work programme will continue to develop as the evidence
base for equality issues and dementia evolves. The aim is to ensure that the health and
social care workforce in Scotland remains equipped with the knowledge and skills to
deliver an individualised, culturally competent care approach.

12. Recommendation 4
Further research is needed:
• To determine the most effective ways to raise understanding
and awareness of dementia among different population
groups.
• To identify and evaluate the impact of culturally competent
dementia friendly community approaches in increasing
awareness of dementia and diagnosis rates.
• To collect Scottish incidence and prevalence data in relation
to people with protected characteristics and dementia,
including homeless people and prisoners.

13. Thank you
The report ‘Dementia and Equality: meeting the
challenge in Scotland’ is available to download at
http://www.healthscotland.scot/publications/dementia-and-equality-
meeting-the-challenge-in-scotland
Thank you for listening