Decision making and monitoring
28. Based on the evidence gathered in stages 1, 2 and 3, this process has identified that commitments in the Dementia and COVID-19 National Action Plan will require attention to the issues identified in this EQIA, to ensure equitable implementation of the Dementia and COVID-19 National Action Plan.
29. It is expected that the actions proposed in the strategy will have a positive effect on a number of Protected Characteristics and other equality considerations. However, barriers to equitable provision of or access to some of these policies have been identified. It is important to take action to mitigate this, to ensure these policies are equally accessible and to the benefit of everyone with dementia, and to their carers.
Mitigating barriers to accessing these policies
30. As a result of the impact analysis, a sub-group has been created which will report back to the main national dementia group. This sits alongside a separate recommendation tracker from the National Advisory Group, on the Dementia and Equality report from Public Health Scotland.
31. Next steps include work to ensure that the policy implementation includes specific groups such as those with younger onset dementia, ethnic minorities and people with learning/ intellectual disabilities; as well as working with delivery partners to ensure they fully understand the equality impacts of this National Action Plan. Suggested next steps relating to the distinct equalities categories include:
32. Age: Policies for which barriers were identified according to age were: supporting a skilled and knowledgeable workforce and service modernisation; being part of the community; support for a timely diagnosis and post-diagnostic community support and living well at home.
33. In order to ensure these policies benefit people with younger-onset dementia as much as they do those who experience dementia later in life, work should be done to ensure the explicit inclusion of those with younger-onset dementia. This includes working closely alongside specific support groups such as the Stand Younger Onset Dementia Group in further developing and implementing these policies. Targeted support should be made available which takes into account the specific and differential needs of those with younger onset dementia, for example in claiming benefits where they lose entitlement or capacity to work. There should be work on removing the barriers for younger people to get a diagnosis of dementia and tackling misdiagnosis. For younger carers of people with dementia, efforts to signpost what financial help is available through the Scottish Young Carer Services Alliance or by setting this out on a blog post on the Young Scot young carer page will be explored with the carers team.
34. Learning/ intellectual disabilities: A number of barriers to accessing policies within this National Action Plan were identified for people with learning/ intellectual disabilities and dementia, or for their carers. These included barriers to policies around living well at home; being part of the community and support for a timely diagnosis and post-diagnostic support. In all areas of life citizens with a learning/ intellectual disability experience significant discrimination and prejudice. These attitudes are very likely to present a barrier to citizens with a learning/ intellectual disability having equal access to being part of the community. Likewise, the lack of high quality social care support for people with learning/ intellectual disabilities may present a barrier to ensuring this group can live well at home. Diagnostic overshadowing is also a pronounced issue for people with learning/ intellectual disabilities, as is getting the right support post-diagnosis, as "mainstream" services may not be tailored to their needs.
35. In order to ensure these policies benefit people with learning/ intellectual disabilities and their carers, there should be a continuation of the coordinated work between the dementia and learning/ intellectual disabilities teams within the Scottish Government. Wider work around these two points should continue, including research into the impact of COVID-19 on people with learning/ intellectual disabilities and dementia in Scotland. These policies should be developed in coordination with learning/ intellectual disabilities stakeholder organisations and communicated through their networks, in an easy-read format - as with this National Action Plan itself. The policy around supporting a skilled and knowledgeable workforce and service modernisation should include better education for health and care workers around the complex needs of people with learning/ intellectual disabilities and dementia, including tailoring assessments pre-diagnosis.
36. Blind, Deaf, Deaf-blind, hard of hearing or deafened people: Barriers to accessing timely and linguistically/culturally appropriate diagnosis and post-diagnostic support, a policy of this National Action Plan, were identified for these groups. People belonging to one of these groups and who develop dementia often face additional challenges. Deaf people who sign BSL also have social, cultural and linguistic needs that can be unmet or overlooked, with their deafness being viewed solely as a medical condition or disability. Sensory loss may not be not viewed as a priority for self-directed support assessment and diagnostic overshadowing may occur in which support is provided for the person with dementia, but their visual and/or hearing impairment is not properly identified and treated or supported.
37. Ensuring these barriers are removed will require close working with relevant stakeholder groups as these policies are developed and implemented, to ensure these policies are both accessible and affectual. In the short-term, care home staff should be aware of the exemption regarding staff wearing of masks for those who need to lip-read, or ensure use of clear masks if suitable. Adaptions and support should be in place - e.g. equipment, changes to the environment, clear communication strategies, the booking of interpreters and communication support, and other person-centred adjustments. In the longer-term, training and upskilling of staff will be key to ensuring a timely diagnosis and quality post-diagnostic support - this could mean ensuring there are more BSL-signing staff or developing a diagnostic toolkit around dementia diagnosis for those who are Deaf/BSL-signing; deafened or hard of hearing; or those who are blind or Deaf-blind, for instance.
38. Trans people: Barriers to accessing timely diagnosis and post-diagnostic support and living well at home or living safely in a care home, each a policy of this National Action Plan, were identified for trans people. The lack of data around the number of people with dementia who identify as trans presents a significant barrier to ensuring trans people benefit from these policies. Trans people report experiencing widespread discrimination and poor experiences of healthcare, which present significant barriers to trans people seeking medical help. Dementia may be pathologised for trans people, or changes in behaviour may be more likely to go unnoticed. The ongoing prejudice and discrimination transport report experiencing in health and social care contexts presents a barrier to living well and safely at home or in a care home and places limits on ensuring psychological safety and the ability for trans people to be open about their identity.
39: Proactive actions are needed from the government and public bodies to seek information on prevalence of dementia amongst trans people. The Scottish Government is taking an important first step in this regard, by asking questions about gender identity on the next census. Efforts around the inclusion of trans people are required alongside these policies. These should focus on concrete examples of best practice, such as guidance provided by Dementia Australia on LGBTI and dementia, or the dementia cafes for LGBT people being run by Alzheimer's Society in England. It would be highly valuable to explore the possibility of replicating these resources and services in Scotland, with stakeholders such as Alzheimer's Scotland. Substantial and much wider work is needed to ensure trans people feel safe expressing their gender identity in a care home, sheltered housing or acute care setting; to end the pathologisation of trans people and to break down barriers to help-seeking for dementia.
40. Sexual Orientation: LGB people face barriers to accessing timely diagnosis and post-diagnostic support and to living well at home or living safely in a care home. Many of these barriers are similar to those detailed above.
41. As with above, proactive actions are needed by government and public bodies to seek information on prevalence of dementia amongst LGB people. The Scottish Government is taking an important first step in this regard, by asking questions about sexual orientation on the next census. Efforts around the explicit inclusion of LGB people are required alongside these policies. These should focus on concrete examples of best practice, such as guidance provided by Dementia Australia on LGBTI and dementia, or the dementia cafes for LGBT people being run by Alzheimer's Society in England. It would be highly valuable to explore the possibility of replicating these resources and services in Scotland with organisations such as Alzheimer's Scotland. Wider work is required to ensure LGB people feel safe expressing their identity in a care home, sheltered housing or acute care setting and to break down barriers to help-seeking for dementia caused by a reluctance to engage with dementia and mental health services.
42. Race and ethnicity: There are several policies outlined in this National Action Plan for which there may be barriers related to race and ethnicity. Black and Minority Ethnic communities often have specific barriers to diagnosis and face barriers accessing necessary post-diagnostic support, once diagnosed. There are specific barriers to being part of the community due to community approaches differentiating according to cultural backgrounds, for instance, and approaches to palliative and end of life care may well also differ.
43. In order to ensure equitable access to these policies, investment in wider awareness-raising amongst communities about dementia and the services available (and amongst decision makers), as well as upskilling providers about delivering culturally appropriate and accessible service, should occur. There are several major reports which have been published which are incisive in their recommendations and should be drawn upon, such as the Scottish Government's report 'Improving the Lives of Scotland's Gypsy/Travellers (2019-2021)', which makes specific recommendations around improving access to public services and testing new ways to tackle health inequality in these communities. Other guidance should be disseminated, such as guidance produced by Alzheimer Europe, for health and social care workers, which calls for HSC workers to for e.g. provide people from different ethnic communities with culturally appropriate and understandable information about dementia and existing services and support. The Life Changes Trust's publication on their ethnic minority dementia carers project also makes useful recommendations which would help to ensure these policies benefit people from minority ethnic communities. There should be targeted efforts to ensure these policies benefit ethnic minority communities.
44. Religion and belief: Some of the barriers regarding race and ethnicity will intersect with those regarding religion and belief, given the overlap between faith and ethnicity in some instances. Two specific policies for which there may be barriers according to religion or belief concern living safely in a care home and improving the hospital experience. A patient with dementia living in a care home or being treated in a hospital setting may struggle to explain their needs/ preferences for intimate care that relate to their religion and culture.
45. As above, ensuring a policy around supporting a skilled and knowledgeable workforce and service modernisation - as promoted in this National Action Plan - gives staff more than just the basics of cultural awareness. This will be key to removing these barriers. Guidance is needed to prevent stereotyping: staff should be made aware of cultural and religious diversity while taking a person-centred approach.
46. Socioeconomic deprivation, digital exclusion and rural/ remote location: Socioeconomic disadvantage is a defining factor in digital exclusion and focusing virtual post-diagnostic support may limit the access of those from lower socioeconomic backgrounds. Barriers to living well at home and support for family carers may likewise arise for those who live in rural/ remote areas, due to connectivity issues and potential digital exclusion. Digital exclusion itself acts as a barrier to accessing these policies, with the transition to digital during COVID-19 having left behind those who are digitally excluded.
47. Any move towards virtual post-diagnostic support or diagnosis should be balanced out with a consideration of the needs of those who are digitally excluded. Where necessary and safe, practitioners should be supported to do home visits and phone calls should be offered as an alternative to video consultations. In the longer-term, work is being done by Connecting Scotland to address issues around receiving an internet connection and access to table devices. Digital connectivity is already being promoted by the Scottish Government via the Digital Health and Care Initiative: Connecting Scotland. This is likely to benefit both those facing socioeconomic disadvantage and those in rural/ remote areas, who are more likely to be digitally excluded. Addressing digital exclusion will enable better access to these policies, including improved home living through the use of smart technology for those with dementia.
48. Inclusivity and equality are at the heart of the National Action Plan's policies and as such the Equality Impact analysis has been a key driver in shaping how we intend to build upon, continue and expand the national action we have been taking since March to support people with dementia and their carers during the pandemic, and to strengthen the resilience of our communities across Scotland to recover through the complementary action of the NHS, local authorities and the third sector.
49. It should be reiterated that this EQIA applies to the National Action Plan's overarching policy proposals and that further Equality Impact analyses will be required for individual policies.
Monitoring and Review
50. It is intended that our progress in meeting the actions described in the Strategy will be monitored and reviewed regularly over the next 2 years and formally at 12 and 24 months post-publication. A sub-group has been created which will report back to the main national dementia group regularly and oversee this monitoring. Equality impact will be a key factor in measuring and determining our progress and as such will be fully scrutinised at these points.
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