Publication - Impact assessment

Coronavirus (COVID-19) dementia action plan: equality impact assessment

Published: 24 Mar 2021

This equality impact assessment (EQIA) considers evidence around equalities categories and outlines a number of actions required to ensure equitable access to the policies in our national action plan to continue to support recovery for people with dementia and their carers.

Coronavirus (COVID-19) dementia action plan: equality impact assessment
Data and evidence gathering, involvement and consultation

Data and evidence gathering, involvement and consultation

The information gathering exercises returned the following qualitative and quantitative data. Please note that these exercises did not raise any specific evidence in relation to Pregnancy And Maternity or Marriage and Civil Partnership.

Age:

Older people are more susceptive to the severe negative health effects of COVID-19. The vast majority of long-stay care home residents are over 65, and over three-quarters of social care at home clients are over 65. Over half of older unpaid carers provide 35 hours of care a week. Though dementia is primarily an illness associated with this age group, it can also develop in younger people under the age of 65. An estimated 3,200 people in Scotland have younger onset dementia. Those with younger onset dementia are more likely to have one of the rarer causes of dementia where the symptoms are less familiar to clinicians and are likely to have specific needs or face specific issues. Some of the issues highlighted by Public Health Scotland research are: being 'out of sync' with social expectation of life stages; premature retirement with implications for financial position; impact on family role and dynamics; a greater sense of social isolation and having a negative impact on self-identity and self-esteem. Those with younger onset dementia may face particular challenges around accessing, for example, Self-Directed Support or employment benefits. Self-Directed Support is intended to ensure people's right to direct their own social care support, across all age groups and regardless of the reason that support is needed. Younger carers may also face particular challenges when caring for people with dementia.

Evidence gathered and Strength/quality of evidence

  • Older people are more likely to have underlying health conditions, making them more susceptible to the severe negative health effects of COVID-19. Nine in ten deaths involving COVID-19 in Scotland have been among those aged 65+ and two-fifths have been among those aged 85+. Older people are also more likely to live alone, less likely to have internet access and less likely to use it even if they do have it, which has potentially significant implications for their wellbeing during lockdown. They are also more likely to live in care homes or be receiving care at home, both of which have seen significant service changes during lockdown. Many older people have faced disruptions as family members are unable to visit or provide unpaid care and support.
  • 17% of people aged 50 to 64 provide unpaid care to a relative, friend or neighbour. This compares to 2% of under-25s, 10% of 25-49 year olds and 11% of over-65s. Over half of older carers (aged 65 and over) provide 35 hours of care a week.
  • The Scottish Human Rights Commission investigated the impact of The Coronavirus Act 2020, which contains several provisions in relation to social care, namely sections 16 and 17 of the Act, which amend the Social Work Scotland Act 1968, the Social Care (Self-directed Support) Scotland Act 2013 and the Carers (Scotland) Act 2016. The Commission raised concerns that older people may end up with an inappropriate or inadequate care or support package due to lack of proper assessment, or in the case of adults with incapacity, the lack of a full assessment may have further repercussions with respect to procedural safeguards. Additionally, the Commission reported that the conditions of lockdown under the Health Protection (Coronavirus) (Restrictions) (Scotland) Regulations 2020 were likely to mean that unpaid carers would have to take on a far greater responsibility for care and support at home, but without the guarantee of an assessment or the potential for support to undertake this role.
  • 91% of long stay care home residents were aged 65+ in 2017/18. 77% of Social Care at home clients were 65+ in 2017/18, meaning around one-quarter were under 65.
  • Although dementia is primarily an illness associated with older people, it can also develop in younger people under the age of 65. There are an estimated 3,200 people with younger onset dementia in Scotland. There has long been recognition of the need to improve the equity and range of service provision across Scotland for people with dementia who are under the age of 65.
  • Younger people may have different needs including issues around childcare, employment, age appropriate peer support and financial impact on them and their dependents. According to Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016), challenges for people with younger onset dementia and their families fall into two main areas: diagnosis and post-diagnostic support; and the impact of the diagnosis on the person and the family. There are a number of barriers to people being diagnosed. Symptoms may be misattributed to other conditions such as stress, depression, menopause, excess alcohol use and relationship difficulties.
  • Younger people are more likely than older people to have one of the rarer causes of dementia where the symptoms are less familiar to clinicians. The initial pathway through diagnosis varies considerably for those aged under 65. Younger adults may be diagnosed either by psychiatrists based in older adult teams, psychiatrists based in mental health teams or through neurology departments in the acute sector.
  • 'My Support, My Choice' report on SDS, highlighted that older people need better info about self-directed support.
  • Public Health Scotland's (2016) report noted that research has identified the particular subjective experience of younger people with dementia and their age-specific need for emotional support and psychological intervention. Some of the issues highlighted by this research were, being 'out of sync' with social expectation of life stages; premature retirement with implications for financial position; impact on family role and dynamics; a greater sense of social isolation and having a negative impact on self-identity and self-esteem.
  • Moreover, the report highlights that families of younger people with dementia also have their own specific needs: e.g. longer periods of uncertainty, dual loss of employment and income due to caring, frustration and grief, lack of peer support, and responsibility for families and young children.
  • When engaged on the EQIA, members of the Scottish Dementia Working Group voiced the need for accessible transport for older people, as dementia can mean an end to driving, and the desire to continue living independently was emphasised. Concerns were expressed around young carers' knowledge and ability in terms of accessing financial help to assist them with their caring responsibilities for a loved one with dementia, if they are caring for a parent with early-onset dementia (for example). One person with younger-onset dementia noted they were dismissed from their job before a diagnosis was even confirmed and that dealing with the Department of Work & Pensions to claim the benefits they were entitled to, but which they were not fully informed about, was extremely distressing.
  • Issues around two other members with younger-onset dementia being diagnosed were also highlighted during the engagement sessions: though the men live in completely different health board areas, they had the same issues, such as not being able to access their workplace pension early and polices in place for mortgage cover around critical illness not being paid out. Other experiences were highlighted by STAND members with younger onset dementia. One person noted that there is very little support for people under the age of 65, which is why the STAND group was formed. Stigma and loss were raised as "a huge issue" which STAND are trying to educate people on. It was emphasised that, on dementia prevention, it is important that not to frame this in such a way as to blame individuals diagnosed with dementia on the basis of lifestyle choices and behaviours. Again, issues with accessing benefits for younger people with dementia was highlighted as a key concern, with the paper work being extremely complex and help to complete it unavailable.
  • Likewise, STAND members stated that self-directed support was "not working for people with younger onset dementia as it should be." The principle of SDS it is to help people to stay well and stay independent. But they reported that "this is not happening: it was felt that younger people need social support and assistance, but SDS is not being provided for this."
  • Support for a timely diagnosis was highlighted as key and The Dementia Nurse Consultant service in Fife was highlighted as a gold standard service by STAND members.
  • According to Age Scotland, people with dementia/older people are not always offered all the options around self-directed support: there is a traditional focus on task and time rather than on the variety. It was noted that older people living with dementia are less likely to be aware of their diagnosis (either not having capacity to retain info, or families deciding that it is not in their best interest to be aware). Policies need to also be targeted at those who do not acknowledge, identify with or be aware of their diagnosis, therefore. Under-claiming of benefits by older people was also highlighted as endemic. Age Scotland highlighted a need to focus on the older 'older' age group (over 80) who often have co-morbidities and live with family members who do not consider themselves carers.

Source

Disability:

People with a disability or multiple disabilities and dementia face particular challenges. During the pandemic, disabled people have been potentially at increased risk of health harm from COVID-19. They have also faced particular challenges as a result of the pandemic. Many disabled people have reported that their social care support has been affected or reduced as a result of the pandemic.

People with a learning/ intellectual disability or autism have been at particular risk from COVID-19, as unfortunately reflected in statistically higher death rates of people with learning/ intellectual disabilities from COVID-19. In 2019 in Scotland, 3,466 adults with learning/intellectual disabilities lived in supported accommodation and 1,837 lived in registered adult care homes. Those living in care homes and residential settings, where social/physical distancing may not be able to be achieved are among those who have felt the impact of the COVID-19 most acutely. Many people with learning/ intellectual disabilities have found their social care provision reduced or changed as a result of the pandemic. Other key areas of concern include a loss of independence, social isolation, the impact on their mental health, concerns regarding medical decision-making and issues for carers and support staff of those with learning/ intellectual disabilities. People with Down's syndrome are likely to be diagnosed with dementia significantly earlier, while people with learning/intellectual disabilities other than Down's syndrome also develop dementia on average 10 years earlier than people without a learning/ intellectual disability. People with a learning / intellectual disability or autism and dementia face particular challenges, including misdiagnosis.

Those who are Deaf/BSL users, deafblind, deafened, hard of hearing, blind or face sight loss and have dementia face particular challenges. 1 in 5 people aged 75+ and 1 in 2 people aged 90+ are living with sight loss or blindness. Given age is the most significant risk factor for both dementia and sensory loss, there will be a substantial number of people living with both conditions. Likewise, many people with dementia also have hearing loss or deafness. Hearing loss is also considered to be a modifiable risk factor for dementia. These groups of people face additional challenges if they have dementia, including an increased sense of disorientation and risk of social isolation. They are also at risk of misdiagnosis.

Evidence gathered and Strength/quality of evidence

  • During the pandemic, disabled people have been at increased risk of health harm from COVID-19 due to difficulties implementing measures to reduce transmission, as well as potentially increased risk of severe health effects due to pre-existing health conditions. Individuals in receipt of social care may also be at greater risk of non-COVID related health harms if they have faced disruptions to formal health and social care arrangements as well as potentially losing the informal care and contact of family members. Families with disabled members are more likely to be in poverty, meaning that the impact of any reduction in income is likely to be particularly harmful.
  • The Scottish Human Rights Commission investigated the impact of The Coronavirus Act 2020, which contains several provisions in relation to social care, namely sections 16 and 17 of the Act, which amend the Social Work Scotland Act 1968, the Social Care (Self-directed Support) Scotland Act 2013 and the Carers (Scotland) Act 2016. The Commission raised concerns that disabled people may end up with an inappropriate or inadequate care or support package due to lack of proper assessment, or in the case of adults with incapacity, the lack of a full assessment may have further repercussions with respect to procedural safeguards. Additionally, the Commission reported that the conditions of lockdown under the Health Protection (Coronavirus) (Restrictions) (Scotland) Regulations 2020, were likely to mean that carers would have to take on a far greater responsibility for care and support at home, but without the guarantee of an assessment or the potential for support to undertake this role.
  • 27% of long stay care home residents had physical disabilities and 33% of all care-home clients had physical disabilities in 2017/18. Many of these people will also have dementia, as 62% of long stay residents were living with dementia in 31 March 2017.
  • Supercharged: A Human Catastrophe : Glasgow Disability Alliance (gda.scot) reported that COVID-19 had widened the inequality already faced by disabled people in Scotland. Prior to the pandemic, disabled people were 3 times more likely to live in poverty and to face food insecurity. GDA reported that policies such as not increasing disability benefits deepened inequality, as did restrictions to social care budgets and extra barriers to social security; and that disabled people already faced persistent barriers to accessing information and services, with isolation, digital exclusion and a lack of accessible information meaning many disabled people have not had the information they need to stay safe and access support during the pandemic. In addition, this research reported that prior to the pandemic, disabled people were already twice as likely to experience isolation or loneliness - which has been worsened by the removal of vital support, loss of social contact and for e.g. by rules for public spaces which have created hostility towards disabled people unable to observe them. Likewise, GDA reported that many disabled people's mental and physical health has worsened, including by disruption to access and treatments.
  • Your Say on Disability asked members whether their social care support had changed because of COVID-19 in August. 93% who received social care support said 'yes'. 99% responded 'no' to the question 'Is there enough support in place for carers and people receiving care during the COVID-19 pandemic?'
  • Inclusion Scotland's COVID-19 evidence survey reported six key areas in which disabled people had been impacted by the pandemic, according to their research. Firstly, they reported that social care support has been stopped or reduced - almost half of responders noted that the COVID-19 pandemic has had an impact on the social care support they get, formal and informal. Secondly, that people have new or increased caring responsibilities: Around 40% of people who responded to this question were experiencing challenges with caring for children/family members since the start of the pandemic. Thirdly, that around two thirds of those responding (64%) said that the crisis has had an impact on getting the food or medicine that they need for themselves or the person they care for. They also reported that disabled people are concerned that they will lose their job (11% of respondents). Lastly, disabled respondents reported that social distancing and isolation is proving extremely challenging: disabled people with and without pre-existing mental health conditions reported finding everyday life under lock-down extremely stressful. 15% reported their mental health had worsened.

Learning/intellectual disabilities and autism

  • COVID-19 has had a significant impact on people with learning/intellectual disabilities and/or autism, with Down's syndrome at particular risk. People with learning/intellectual disabilities are at higher risk of underlying health conditions, including respiratory disorders such as asthma, chronic obstructive pulmonary disease (COPD), and an increased prevalence of swallowing and eating problems which can lead to chest infections and pneumonia. Research from the Scottish Learning Disabilities Observatory identified people with learning/intellectual disabilities were more than 3 times more likely to die from COVID-19 than people without learning/intellectual disabilities. The study also reported people with learning/intellectual disabilities were twice as likely to experience a severe outcome of COVID-19 infection. This mirrors similar studies from Public Health England, which reported a mortality rate up to 6 times higher for people with learning/intellectual disabilities in England, and data from Public Health Wales reporting a mortality rate 3 - 8 times higher. The pandemic has had a disproportionate impact upon people with learning/intellectual disabilities nationally. This impact suggests systemic health inequalities exist.
  • Those living in care homes and residential settings, where social/physical distancing may not be able to be achieved are among those who have felt the impact of the COVID-19 most acutely. In 2019 in Scotland, 3,466 adults with learning/intellectual disabilities lived in supported accommodation and 1,837 lived in registered adult care homes. Given the incidence of COVID-19 in care homes, people with learning/intellectual disabilities have been disproportionately affected by COVID-19.
  • People with learning/intellectual disabilities have a higher risk of developing dementia compared to the rest of the general population. Best available data for Scotland comes from a UK-wide study which estimated that 1 in 5 people with learning/intellectual disabilities will develop dementia. Communication challenges, and an increased potential for sensory loss can also make diagnosis more difficult as the person with learning/intellectual disabilities may be unable to articulate what is happening to them. This can also lead to a possible risk of misdiagnosis. People First Scotland note that people with learning/intellectual disabilities face significant barriers to accessing equal healthcare which results in poorer health outcomes and lower life expectancy than the rest of society.
  • Public Health Scotland's 2016 report noted that there is a significantly increased risk for people with Down's syndrome of being diagnosed with dementia at a much earlier age. The mean age of dementia diagnosis in people with Down's syndrome is 55. People with learning/intellectual disabilities other than Down's syndrome also develop dementia on average 10 years earlier than people without a learning/ intellectual disability. It is predicted that 1 in 3 people with Down's syndrome over the age of 50 will develop dementia and 1 in 50 people with Down's Syndrome will develop dementia in their 30s. The prevalence of Alzheimer's type dementia in persons with Down's Syndrome exceeds that of the general population. Because more people with Down's Syndrome are living longer there is a higher prevalence: more than half of those with Down's Syndrome over 60 years old have dementia. The report also noted that there may be difficulties accessing "mainstream" dementia services for people with learning/ intellectual disabilities, as these services may not take account of their needs, and specialist services may be required.
  • Scottish Commission for People with Learning Disabilities (SCLD) consulted with people with learning/intellectual disabilities and their carers between 14th April and 5th May 2020, about the impact of the pandemic on them (link in evidence below). Key areas of concern included removal of support and loss of independence; social isolation and the impact on people with learning/ intellectual disabilities' mental health; confusion and anxiety around public information; concerns regarding medical decision-making; access to school hubs and a range of issues facing family carers and support staff, such as lack of PPE.
  • Autism Network Scotland's research on ageing and autism suggested several barriers facing older autistic adults, some of whom are at risk of developing dementia. These were: Lack of access to appropriate services for older autistic adult; mental health, wellbeing and self-awareness; employment; lack of meaningful support and understanding to prepare for future; lack of knowledge, understanding and acceptance in society and professionals. Key areas of importance for autistic individuals included diagnostic and post diagnostic pathways for older adults, social isolation and the impact on physical and mental health, long term care provision and planning for older adults and support for parents and carers. Ideas around improving outcomes focused on person-centred, support with long-term planning and dedicated services; engagement, representation and consultation; social and community support and awareness understanding and training for public and practitioners.
  • The SCLD have argued that one of the key impacts of the pandemic for people with learning/intellectual disabilities has been the removal of support hours at the start of the pandemic. This has had a detrimental impact on people with learning/intellectual disabilities and their carers. In the SCLD's survey, 64% of individuals said their support had changed due to the COVID-19 emergency. 58% of parents, carers and support workers said that people with learning/intellectual disabilities were not getting the support they needed during the COVID-19 emergency. Some people with learning/intellectual disabilities are facing challenges in being isolated from their friends and family. 57% of people with learning/intellectual disabilities who responded to the survey said they felt lonelier since lockdown measures were put in place. This issue appears to be particularly felt by those in residential settings who can no longer receive visits from their family.
  • At the engagement event, it was noted that people with learning/intellectual disabilities can sometimes have limited access to appropriate healthcare which meets their needs, particularly due to diagnostic overshadowing - which occurs when a healthcare professional assumes that a patient's symptoms are due to their disability or coexisting mental health condition, rather than fully exploring the cause of patient's symptoms. People with learning/ intellectual disabilities and dementia may have complex co-morbidities. Diagnostic overshadowing remains a serious issue. Common differential diagnoses for individuals with Down's syndrome presenting with loss of skills are depressive illness, sensory impairments (hearing or visual), hypothyroidism, and obstructive sleep apnoea. Life changes as well as effects of medication can also mimic the symptoms of dementia. Pain recognition and pain management is often over-looked amongst people with learning/intellectual disabilities, too. People First Scotland noted that it is likely that citizens with learning/ intellectual disabilities will at times be either treated as if a diagnosis of dementia applies inappropriately, due to the lack of knowledge of health professionals regarding learning/intellectual disability, or that citizens will be sent to live in care homes where other residents are elderly when they are not. People First Scotland also stated that emergency pandemic legislation withdrew safeguards and reduced checks and balances, undermining people with learning/intellectual disabilities' human rights.
  • At the engagement event it was also highlighted that older (75+) family carers of adults with learning/intellectual disabilities may have dementia.

Deafness or blindness

  • There are four key pillars of deafness: deaf/BSL users, deafblind, deafened and hard of hearing. People who identify as Deaf, BSL users would have been born deaf or became deaf in early childhood and as a consequence British Sign Language (BSL) is their first language. Deaf, BSL users normally identify with a unique Deaf Culture.
  • Deaf-Blindness is defined by Deaf Blind Scotland as "when one sense can no longer compensate for the other." As the work of Deaf Scotland notes, there are various types of deaf-blindness, also termed 'dual sensory loss'. Firstly, "Congenital", which is a term used to describe children born with hearing loss and sight loss or who acquire these two conditions prior to language development. Secondly, "acquired": people in this category are either born deaf and experience sight loss later; born blind and become deaf later in life; or it could apply to those who have lost their sight and hearing later in life. People who are Deafened are those who become deaf after losing hearing as an adult. Deafness here can be the result of an accident or trauma or might be a side-effect of an illness. The term 'Hard of Hearing' is used to describe those whose hearing loss is mild to moderate and who lose their hearing gradually over time.
  • 16% of people who provide unpaid care to a relative, friend or neighbour are deaf or have partial hearing loss. 40% of people aged 50+ are living with hearing loss, deafness or are Deaf. 70% of people over the age of 70 are living with hearing loss, deafness or are Deaf.
  • According to Deaf Scotland, there are over 31,000 deaf-blind, 700,000 hard of hearing and 350,000 deafened people in Scotland, totalling around 1 million Scots. 12,500 use British sign language. Many people with dementia also have hearing loss or deafness. Deaf Scotland's data reports that the highest prevalence rate in Scotland can be found in Dundee City, at 11.02% and the lowest in North Ayrshire, at 5.03%. 3 out of 4 Deafblind people are in later life (so by that virtue alone more at risk of dementia).
  • 1 in 5 people aged 75+ are living with sight loss or blindness. 1 in 2 people over the age of 90 is living with sight loss or blindness. Given age is the most significant risk factor for both dementia and sensory loss, there will be a substantial number of people living with both conditions. Sight Scotland has estimated the number people living with sight loss and dementia in Scotland is around 12,500 people; other estimates are closer to 17,000.
  • By 2017, the Lancet Commission on Dementia, Prevention, Intervention and Care identified hearing loss as one of 9 modifiable risk factors for dementia. Later research has also confirmed that sensory loss impacted upon cognitive ability. Hearing loss is therefore now considered to be a modifiable risk factor for dementia. Deaf-Blind Scotland have argued that work needs to be done to prevent sensory loss where possible, particularly dual sensory loss, and to provide alternative communication skills as early as possible. Visual impairment is a symptom of a number of forms of dementia, as highlighted by the Life Changes Trust.
  • People who are Deaf, blind or deaf-blind, or who experience deafness or hearing/sight loss and who develop dementia face additional challenges, including an increased sense of disorientation and risk of social isolation, as evidenced by Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016). The report noted that communication difficulties, and an increased potential for sensory deafness, blindness, also hinder diagnosis as the person with learning/ intellectual disabilities may be unable to articulate what is happening to them. There is also a high risk of misdiagnosis. The onset of dementia may be more difficult to detect by family and carers. Moreover, a profoundly deaf person can deteriorate rapidly due to isolation and lack of communication and simulation, with the risk of leading to depression.
  • Deaf-blind people may face misdiagnosis, due to significant communication barriers, social withdrawal (often due to the sheer mental effort of communicating) and lack of trust in health and social care practitioners. A Deafblind person may ask the same question of a number of people, which can be mistaken for elements of paranoia.
  • The engagement event involved a BSL Policy Officer, alongside Deaf Action, British Deaf Association, Deaf Scotland, Action on Hearing Loss and RNIB. These organisations felt that person-centred dementia care is not being delivered to people with sensory loss and current processes don't work for people with sensory loss. They highlighted particular challenges faced by people who are of Minority Ethnic background and are Deaf, as they may not use BSL and are less likely to access services for those who are Deaf; though groups such as the Scottish Ethnic Minority Deaf Club are working to change this.
  • These groups argued that person-centred dementia care is not being delivered to people with sensory loss and that there is a need to create wider access to planning and decision-making processes and specifically refer to communication and adjustments as a matter of course in policy development and delivery. It was emphasised that most people with dementia and sensory loss/ BSL-users live at home, so language and resources in communities must be accessible. The BDA and RNIB referred to good practice guidance and toolkits they have produced.
  • Major obstacles to dementia diagnosis for BSL users were highlighted by the BDA: "There is currently no dementia assessment in Scotland tailored for Deaf people who use British Sign Language (BSL) and Deaf people with dementia and their carers or family are often excluded from mainstream dementia services, care home activities and medical or professional discussions."
  • The British Deaf Association noted that a Deaf person with dementia may sometimes revert to using the language they used most as a child which, in some cases, may be spoken English. Some Deaf people living with dementia may not use BSL anymore and may only rely on spoken communication.
  • Glasgow Disability Alliance research has reported that food insecurity for those with sensory loss, deafness or blindness was worsened during COVID-19 by a lack of support and negative attitudes towards people with an 'invisible' disability who may not have been able to follow new restrictions around for e.g. wearing a face covering.

Data gaps identified and action taken

Gap:

There is no specific Scottish evidence on the number of people in Scotland with a learning/ intellectual disability.

Action:

Best available evidence has been used from a UK study of the number of people with learning/intellectual disabilities and the same figure applied to a Scottish context (1 in 5).

Gap:

More research is needed on multiple sensory loss and dementia. Data shows that up to 17,000 people have sight loss and dementia, but more data is needed on multiple sensory loss and dementia.

Action:

Consultation was made with Deaf-Blind Scotland to ensure a fuller picture of the experiences of people with dementia and multiple sensory loss was considered.

Source

Sex:

Women are at greater risk of dementia due to slightly longer life expectancy at a population level. They are also more likely to be social care clients, both in long-stay care homes and at home, for the same reason. Women are also more likely to be unpaid carers than men in Scotland. Women's caring burden has increased as a result of the pandemic, with particular challenges for carers of those with dementia - many of whom are women. More women have become carers as a result of the pandemic and three-quarters of carers are having to provide more care than prior to the coronavirus outbreak. Women have also been disproportionately affected by the economic impact of the pandemic, which has compounded difficulties around caring responsibilities.

Evidence gathered and Strength/quality of evidence

  • As Public Health Scotland's (2016) report notes, women are at greater risk of dementia, likely because they have a longer life expectancy than men. Estimated prevalence for women is higher across all age groups than for men. 17.8% of 90+ year old women had dementia in Scotland in 2015, compared to 10.2% of men this age.
  • The number of female deaths from dementia (4,214) was almost twice the number of male deaths (2,207) in 2019, but the gap is narrowing in percentage terms as female deaths were nearer three times the number of male deaths in 2000. More women are social care at home clients than men (62%) and more women are long stay care home residents than men (68%).
  • As of 11 June, 628,000 people had been furloughed in Scotland. In Scotland, women form the majority (51%) of workers put on furlough between March and August 2020 according to HMRC. Around 133,000 more women were furloughed than men during the first wave of coronavirus. As women are more likely to be unpaid carers, and are more likely to have been furloughed or working in sectors more negatively impacted by the pandemic, many will have been doubly impacted by the pandemic through loss of income and the increased burden on carers.
  • According to Engender, women's unpaid care work has been compounded by public policy and service delivery measures implemented in response to the pandemic. Work by Glasgow Disability Alliance and Inclusion Scotland has reported that social care packages have been reduced and stopped. This undermines disabled women's rights to dignified care and has also displaced care responsibility onto female family members. Carers Week 2020 Research Report - Carers UK suggests that there are now as many as 1.1 million unpaid carers in Scotland, of which 61% are women. This is an increase of 392,000 since the start of the crisis, with 78% of carers having to provide more care than prior to the coronavirus outbreak.
  • Women have been disproportionately impacted by the pandemic in Scotland. According to Engender, the majority of those employed in many 'shut down' sectors have been women. Women are also over-represented in many of the sectors where median hourly pay fell below the current rate of the real living wage if employers did not bridge the 20% shortfall for furloughed staff. Women earn less than men on average and are less likely to be eligible for sick pay. Caring responsibilities may make it harder to maintain or take on employment and women are four times more likely than men to give up employment because of multiple caring responsibilities.
  • 'My Support, My Choice' report on SDS highlighted that women need better info about self-directed support.
  • At the engagement event, Age Scotland argued that there is an intersection between age and gender, given more women have dementia, and the excess mortality rates of April - June period of 2020. They said that ongoing issues with some aspects of women's health being taken seriously and accessing their pension entitlement were also highlighted, with the intersection between lower labour market engagement and longer life expectancy action described as "a particular challenge for women."
  • At the equality impact assessment engagement session, there was broad agreement that women have been disproportionately affected due to adopting a family caring role and because women generally tend to be in lower paid roles. Stakeholders, who represented carers organisations, noted an assumption that unpaid carers do not have another role, even though a significant number have another paid job. The need to look at intersectional gender roles, and the invisible voices from within some cultures, was also referenced.

Data gaps identified and action taken

Gap:

  • At the time of writing, data on age, gender, value of claims and employer size were only published at a UK level and not available at a Scotland level.

Action:

  • Statistics regarding the UK have been extrapolated to consider the impact of furlough on women in Scotland.

Gap:

  • A key gap is the lack of reliable data that tells us how domestic and reproductive labour is being distributed between opposite sex couples, both before and since the start of lockdown in Scotland. There is also a general lack of gender-sensitive sex-disaggregated data which could provide an accurate picture of how men and women are experiencing life during the pandemic.

Action:

  • I have used evidence from Engender who have been conducting specific work around the impact of COVID-19 on women in Scotland. As they note, it is important that the Scottish Government and its agencies strive to gather and analyse more information on gendered patterns within care and then bring these to bear on policymaking.

Source

Gender reassignment/ Transgender

There is a lack of evidence regarding transgender people with dementia in Scotland. At the engagement event it was noted that data collection around the transgender identity of those with dementia does not occur, rendering this group invisible. Some transgender people report experiencing transphobic language and behaviour in health and social care settings, which acts as a barrier to feeling safe and confident in disclosing their identity. Widespread discrimination and poor experiences of healthcare and social care means that societal and health or social care attitudes are a very significant barrier to seeking help or accessing services for dementia. Stonewall Scotland has reported that almost two in five trans people (37%) avoid seeking healthcare for fear of discrimination from staff. For older transgender people in particular, discrimination is something that is likely to have affected many aspects of their life.

Evidence gathered and Strength/quality of evidence

  • A transgender person is someone whose gender identity or expression does not fully correspond with their sex at birth. This includes but is not limited to trans men, trans women and non-binary people. Many transgender people, including those who are living permanently in their acquired gender, may keep their transgender identity private. Trans people represent less than 1% of the population.
  • In Scotland in 2010, 55% of people held discriminatory attitudes towards transgender people, according to Scottish Government Social Research. The SSAS 2015 updated this: although there was a decline from 49% in 2010, 32% of respondents still said they would be unhappy with someone in their family marrying someone who has undergone gender reassignment, and 39% would be unhappy with someone in their family marrying someone who cross-dresses (down from 55% in 2010).
  • The EHRC's 2018 report on attitudes in Scotland suggested that some minority groups that were once more hidden, such as transgender people, may now feel more confident about publicly expressing their identity. This report also noted that some transgender people experienced transphobic language and behaviour in health and social care settings.
  • Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) suggested that transgender people avoid using social care because of discriminatory attitudes and the perception of social care services as a space where discrimination may take place. Many transgender people will not be out to their service providers. Widespread discrimination and poor experiences of healthcare and social care means that societal and health or social care attitudes are a very significant barrier to seeking help or accessing services for dementia. Admission to hospital or a care home can have a significant mental and physical impact on someone with dementia who is transgender, who may not be able to present as their chosen gender. Cessation of hormones can happen due to the onset of dementia for a trans person who has been through hormone therapy. This can have a significant negative mental and physical impact on someone with dementia who is transgender. For older transgender people in particular, discrimination is something that is likely to have affected many different facets of their lives, such as employment and finances, social networks, personal and family relationships, and health.
  • Stonewall Scotland has reported that almost two in five trans people (37%) avoid seeking healthcare for fear of discrimination from staff. In Scotland, 22% of LGBT people would feel uncomfortable about being open about their sexual orientation or gender identity with NHS staff, and 52% of trans people said the same in relation to adult social care staff). One in four LGBT people (24%) have faced discrimination in healthcare settings and nearly three in five trans people (59%) have experienced healthcare staff having a lack of understanding of specific trans health needs.
  • At the engagement event, LGBT Health and Wellbeing noted that many in LGBT groups are "invisible populations", meaning there are crucial data gaps. The Scottish Trans Alliance suggested that proactive actions are therefore needed by government and public bodies, to seek information on prevalence of dementia amongst trans people. They noted the same in relation to intersex people, or people with a variation of sex characteristics. The Scottish Trans Alliance also argued that policy is usually written on capturing 99% of the people, but equality assessments must focus on those who are traditionally invisible or ignored. A policy of 'everybody is welcome' is not sufficient - marginalised people are dehumanised and so may not feel that they are included in this 'everybody'. Explicit inclusion is needed, focusing on concrete actions of best practice actively including LGBTI people with dementia. The LGBT+ Health and Wellbeing Network noted that there is work being done in other parts of the UK on this, e.g. dementia cafes for LGBT people being run by Alzheimer's Society.

Data gaps identified and action taken

Gap:

The EHRC's 2018 report 'Is Scotland Fairer' noted that small groups including transgender people are rendered 'virtually invisible' by a lack of data. There is minimal literature around the experiences of transgender people with dementia in Scotland.

Action:

An engagement event involving the Scottish Trans Alliance and LGBT Health and Wellbeing was organised as part of consultation on the equality impact assessment.

Source

Sexual orientation:

Many of the same issues around prejudice and discrimination which impact upon transgender people also impact upon lesbian, gay and bisexual people. At the engagement event it was noted that there is a lack of data collection around the sexual orientation of those with dementia, which can result in the exclusion of this group. Evidence suggests a significant proportion of the older population continue to hold homophobic views, and some LGB people are still experiencing homophobic or bi-phobic language and behaviour in health and social car settings. Many LGB people say they would be uncomfortable with social or healthcare providers knowing their sexual orientation. For many older LGB people, the legacy of criminalising sexual orientation for LGB people remains, and is within living memory. This acts as a barrier to help-seeking for dementia. Moreover, there are particular challenges for LGB people with dementia and their carers. For example, they may face assumptions, discrimination or a lack of acceptance, without having their individual or differential circumstances recognised.

Evidence gathered and Strength/quality of evidence

Data gaps identified and action taken

Gap:

There is insufficient literature around the specific experiences of lesbian, gay and bisexual people with dementia.

Action:

An engagement event involving the LGBT Health and Wellbeing and Stonewall Scotland was organised as part of the wider consultation on this equality impact assessment.

Source

Race:

Public Health Scotland's preliminary evidence found "no signal of increased risk of COVID-19 to people from an ethnic minority in Scotland", though evidence from England and Wales has had different conclusions. 2013 evidence suggests that dementia is more common amongst minority ethnic communities. Prevalence of dementia amongst minority ethnic communities in Scotland is increasing, though the uptake of dementia care services by people from minority ethnic communities remains low. People from minority ethnic backgrounds who experience dementia are less likely to present to services and tend to make contact at a later stage of the illness. Evidence from systematic reviews of qualitative research suggests that barriers to support-seeking for dementia are knowledge, society and/or healthcare related. Language barriers may also contribute. People from minority ethnic communities with dementia, or who are unpaid carers for those with dementia, may have specific needs, which may be culturally contingent, as well as facing specific challenges, for example relating to cultural attitudes around dementia, or to stereotypes or assumptions from health and social care providers.

Evidence gathered and Strength/quality of evidence

  • Public Health Scotland has undertaken analysis to investigate whether COVID-19 outcomes vary by race or ethnic group and published preliminary evidence in May, finding "no signal of increased risk of COVID-19 to people from an ethnic minority in Scotland". They continue to refine this work as additional data becomes available.
  • In 2013, an All Parliamentary Party Group report found that dementia is more common amongst minority ethnic communities as a result of the prevalence of high blood pressure, diabetes, stroke and heart disease, which are all common risk factors for dementia. It is worth noting, however, that this evidence refers to the UK and that the data in question is seven-years old. The report found that families from minority ethnic communities living with dementia struggle with little or no support from the NHS or local government, as specialist services are too few and far between, and that there is an urgent need to increase awareness of dementia among minority ethnic communities. UK data also found that the black African-Caribbean population in the UK experience more prevalence of early onset dementia and have greater risk factors for vascular dementia.
  • Alzheimer Europe research has shown that the number of people with dementia from minority ethnic groups is increasing, as migrant populations in Europe age and some ethnic groups have a higher risk of developing dementia. Yet the uptake of dementia care services by people from minority ethnic communities remains low.
  • Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) has outlined the relationship between ethnicity/ race and dementia. Dementia is often difficult to diagnose in minority ethnic communities, as most cognitive tests are developed and standardised in one ethnic group, which may not transfer appropriately to another ethnic group due to cultural, education, language and other factors.
  • As Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) notes, people from minority ethnic backgrounds who experience dementia are less likely to present to services and tend to make contact at a later stage of the illness. Evidence from systematic reviews of qualitative research suggests that barriers to support-seeking for dementia are knowledge, society and/or healthcare related. Language barriers may also contribute, and may pose particular issues in accessing self-directed support, for example.
  • 'My Support, My Choice' report on SDS highlighted that minority ethnic people need better info about self-directed support.
  • This research found that, for some minority ethnic communities, dementia is not known by a specific term and knowledge and understanding of the disease is limited. Lack of understanding and awareness of dementia creates many barriers for individuals accessing timely support, often resulting in individuals receiving late diagnoses, and families trying to cope for longer without support. Evidence shows that beliefs about dementia and its causes can act as a barrier to people from minority ethnic communities seeking help in some communities. Perceptions of stigma associated with a diagnosis of dementia have also been identified as a barrier to seeking help.
  • As Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) has outlined, the general practitioner is usually the first point of contact for people with dementia and their families. Even though members of the minority ethnic community access primary care in a similar way to the general population, there is a reluctance to engage with mental health services. Previous experiences of discrimination may be a factor. Many families from minority ethnic communities may resist engagement with social and health care services as they fear discrimination or they may have little confidence that services will meet their cultural, linguistic or religious needs.
  • As a report by Scottish Care outlines, issues faced by ethnic minority older people can also include the perceived unsuitability of sheltered housing or a care home to meet their religious and cultural needs - but difficulties arising from this in terms of adapting a home environment where families want their older parents at home, challenges for families without experience, time or resources and unsuitable care at home packages being provided. Other challenges include social isolation and loneliness in sheltered housing or a care home, particularly if language difficulties occur from a loss of or lack of spoken English; dietary needs not being met or difficulties in expressing needs and interests. The report highlights that traditional therapies centring memories or interests may be unsuitable for those of an ethnic minority with dementia, due to a language or cultural barrier and unfamiliar cultural references, particularly if they are a first-generation immigrant.
  • This research has shown that language barriers may contribute to misunderstandings about the healthcare system. Older people from minority ethnic communities may have limited fluency and/or literacy in English. Interpreting services are in short supply, are inadequately advertised and often have limited funding. Potential clients may be unaware that services exist, or uncertain whether they may be able to use these services. For example, people may not know about rights and entitlements such as Self Directed Support, which can also be extremely difficult to access, and consequently is not being used sufficiently.
  • Alzheimer Scotland's further research on Public Health Scotland's report noted that, when accessing services, the use of interpreters can be problematic for some older people of minority ethnic backgrounds. For example, sometimes the gender of interpreters can be important as gender roles may be very important in some minority ethnic communities. Ensuring the consistency of interpreters can therefore be key. Moreover, communities may withdraw support after a diagnosis, so the person may become more isolated, often leading to a delay in seeking a diagnosis. People become more inward looking and insular, for fear of reaction when people find out about their condition. Their research also reported that there may be cultural expectations that relatives, particularly women, should care for the older person with dementia, help-seeking may be frowned upon by other community members. Caring may be kept within the family or seen as part of the role taken on by women in the community. Scottish data shows that 96% of people who report providing unpaid care in Scotland to a relative, friend or neighbour are from a "White Scottish/British/Irish" ethnic background. However, this may be as a result of underreporting by those of minority ethnic backgrounds. For example, the carers questioned by MECOPP were surprised by their Gypsy/ Traveller Carers' project - most within this group did not identify as a carer or use the term carer to describe themselves.
  • In April 2018, Life Changes Trust funded (up to) 2-year projects around people living with dementia and unpaid carers in minority ethnic communities. Four projects worked in nine local authorities over Scotland, targeting Minority Ethnic. These projects were successful in raising awareness of dementia, but illuminated the racial inequality that prevails when accessing health and social care and how it can hinder the ability of families from minority ethnic communities affected by dementia to access critical support. REACH worked in partnership with Life Changes Trust on this. At the engagement event, they argued that the principles of diversity enshrined in National Care Standards are neither understood nor implemented by service commissioners or providers. 12% of Glasgow's population are Black, Asian or minority ethnic but, prior to REACH being funded by Life Changes Trust, there was no dementia support tailored for the minority ethnic community. Moreover, there has been seemingly limited research on impact of dementia on the BAME community.
  • Stakeholders at the engagement event highlighted that employers have an important role to play by: recognising that approaches to caring for older relatives vary and are not contingent on someone's ethnic background and supporting carers whatever their circumstances and arrangements; acknowledging gender bias in caring with women having main responsibility for caring; employing staff from minority ethnic communities to deliver inclusive services.
  • The Scottish Human Rights Commission, in its evidence to the Equal Opportunities Committee in 2013, described the discrimination towards Gypsy/Travellers as "the last bastion of respectable racism". Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) noted that gypsy/traveller communities' experience of prejudice and fear of discrimination negatively impacts on people from these communities seeking help from services and service providers, as well as general awareness of existing services. Moreover, Scottish Government research has shown that high levels of poverty experienced by Gypsy/Travellers is linked to poor health and the lack of employment and integral to all these issues is the provision of sites across Scotland.
  • MECOPP's research further indicates that a lack of recognition and understanding of Gypsy/Traveller culture often results in inadequate responses - though it should be noted this evidence is based on a project started in May 2011. Gypsy/Traveller families often reported that they felt like they were being blamed for causing their own problems, as if it was their ethnicity that was the problem, rather than an inappropriate service or lack of flexibility. For Gypsy/Travellers, community isolation was identified as an additional barrier for those who have experienced long-term misunderstanding and prejudice which has led to an increasing distancing from services, including health services. It is not uncommon for Gypsy/Travellers to travel hundreds of miles to see a known GP or trusted support worker, rather than risk rejection at a local surgery or office. The majority of Gypsy/Traveller carers are not accessing social care services, voluntary or statutory, on a regular basis, and many had never accessed services at all. General knowledge about carers' rights/entitlements within the community is very low; most carers are not in receipt of Carer's Allowance. In their dealings with service-providers and agencies, being listened to was seen as a rare occurrence. For many, caring was very much a shared responsibility. Many reported keep their identity as a hidden for fear of being treated differently by services and others mentioned the perceived inability of GPs and service providers to understand the impact of this on mental health. High levels of illiteracy impact significantly on a carer's ability to search for support. None of the carers MECOPP worked with "were currently accessing any of the Self Directed Support options." One person thought she might have heard about it in the past but when asking about it to her Social Worker, she'd been told it wouldn't be appropriate and would be too much hassle.

Data gaps identified and action taken

Gap:

Public Health Scotland has undertaken analysis to investigate whether COVID-19 outcomes vary by race or ethnic group and published preliminary evidence in May. However, the study acknowledged that "low volume and incomplete data limits the conclusion we can draw at this time." They continue to refine this work as additional data becomes available.

Action:

The disproportionate impact on people of Black and Minority Ethnic (BAME) backgrounds in other parts of the United Kingdom has been considered. A Public Health England review showed that there is an association between belonging to some ethnic groups and the likelihood of testing positive and dying with COVID-19. People of Bangladeshi ethnicity had around twice the risk of death when compared to people of White British ethnicity. People of Chinese, Indian, Pakistani, Other Asian, Caribbean and Other Black ethnicity had between 10 and 50% higher risk of death when compared to White British people. Death rates from COVID-19 were higher for Black and Asian ethnic groups when compared to White ethnic groups.

Gap:

There is no evidence which clearly outlines the number of people from minority ethnic communities living with dementia in Scotland.

Action:

Evidence is drawn from the Life Changes Trust Report, 'Evaluation of Dementia

Projects for Minority Ethnic Communities Across the UK', which notes that there are more than 25,000 older people from minority ethnic communities living with dementia in the UK. Based on APPG on dementia's 2013 report, Life Changes Trust predict that this number is expected to grow to nearly 50,000 by 2026 in England and Wales, and over 172,000 by 2051, a seven-fold increase in 30 years.

Gap:

The EHRC's 2018 report 'Is Scotland Fairer' noted that small groups such as Gypsy/ Travellers are rendered 'virtually invisible' by a lack of data. There is very little or no mention made of minority ethnic groups such as Gypsy/ traveller communities, within published literature on dementia.

Action:

Efforts have been made to consult specifically with GRT representative groups through the equality impact consultation and the involvement of Migration Scotland/ COSLA. I have referred also to MECOPP's Report on informal caring within Gypsy/ Traveller communities.

Source

Religion and Belief:

Religion and belief can intersect with race and ethnicity, causing similar challenges around cultural perceptions or awareness of dementia; differing approaches or stereotyping and assumptions. Faith and cultural norms can impact all aspects of dementia care in all settings. For this reason, many faith communities have developed specific resources or services to support people with dementia. For example, the Church of Scotland has a resource encouraging congregants to become more dementia-friendly and Jewish Care Scotland provides specialist support for Jewish people with dementia. There is also the Living Well project, a collaborative effort between city councils and churches, which provides a safe space for people with memories challenges to gather together and from friendships and community.

Evidence gathered and Strength/quality of evidence

  • As Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) has noted, religion is closely associated with race and ethnicity with regards to community approaches to dementia: there is an interplay between cultural influences relating to religion or belief and those relating to race and ethnicity. Religion and belief impact one's understanding of dementia, but also impact upon a person's access to services.
  • At the engagement event, Faith in Older People shared the importance of acknowledging people's faith and cultural norms in all aspects of dementia care and in all settings. Lots of assumptions are made across services that people with dementia lose awareness of their faith and cultural touchpoints such as food, language and social behaviour. They cited faith-based services as sharing an experience of commissioners, including health and social care practitioners, challenging the need for faith based services. Religious and cultural festivals and norms have an important and positive impact for people living with dementia, connecting them to their identity and community and offering familiarity.
  • Differences in community approaches to caring for older people in families were highlighted during engagement. There is more of a cultural emphasis within some communities towards keeping people at home. Experiences shared at the engagement event ranged from the increasing use of care homes within the Jewish community, to a strong commitment from the Muslim community that caring for elders at home is expected and widely accepted. However, work from Aberdeen Health and Social Care partnership reflects that people of all faiths and none do want to keep their loved ones at home where possible: the problem is a lack of support and in particular a lack of respite care allowing many people to do so. Whilst there may be a more formal emphasis on keeping people at home, within certain cultures and traditions, this does not mean that those who not share that tradition do not hold the same aspirations.

Data gaps identified and action taken

Gap:

There is a lack of evidence about the impact of religion or belief on dementia in Scotland.

Action:

The available evidence has been considered and the work of faith communities supporting people with dementia has been taken into account. This equality impact assessment has approached specific groups representing religion or belief in order to consider the intersection of religion/ belief and dementia more closely.

Source

Other - Socioeconomic inequality:

There is limited evidence to date that suggests that dementia is socially patterned. There is a correlation between socioeconomic status and the impact of COVID-19: the pandemic has had a greater impact upon Scotland's poorest families financially. Moreover, during the first wave, those in the most deprived areas of Scotland are 2.1 times more likely to die with COVID than those living in the least deprived areas. Socioeconomic inequality intersects with other issues, such as digital exclusion.

Evidence gathered and Strength/quality of evidence

  • Currently, there is limited evidence that suggests that dementia is socially patterned. A meta-analysis of eleven community studies determined that an association exists between lower occupational social class and dementia death in men, but not in women, after adjustment for alcohol consumption, smoking, cardiovascular disease, diabetes, psychological distress and age of leaving full-time education. However, this association was not statistically significant.
  • Public Health Scotland's report 'Dementia and Equality: Meeting the Challenges in Scotland' (2016) concluded that, since health inequality persists into old age and many of the risk factors for dementia are associated with socioeconomic disparities in mortality and morbidity, it is possible that - as the age structure of the population changes - social patterning in dementia may become apparent. Alternatively, it may be that people suffering the worst health die before dementia is diagnosed.
  • People with dementia who are homeless are potentially disadvantaged as they have no address; are acutely vulnerable due to the impact of dementia in a transient situation, and are at a higher risk of exploitation if symptoms of dementia are obvious to others. 'My Support, My Choice' report on SDS highlighted that people who have been homeless need better info about self-directed support.
  • COVID-19 has hit Scotland's poorest families the hardest. Two thirds of the young people and families reliant on social security are in a worse financial position than they were pre-pandemic and half reported that their debt was greater. Figures from National Records of Scotland show that people in the most deprived areas were 2.1 times more likely to die with COVID than those living in the least deprived areas.
  • The roles of people actively employed as 'key workers' since lockdown measures were introduced include many that are characterised by low and/ or unstable income. In addition, the Institute for Fiscal Studies estimates that low earners were seven times more likely than high earners to have worked in a sector that has shut down as a result of the lockdown. This, coupled with the cramped accommodation without private outdoors space and more frequent smaller purchases that are common for households experiencing poverty, could significantly increase the chances of infection during lockdown and early release phases.
  • As other Equality Impact Assessments have noted, the effects of COVID-19 layer on top of existing structural imbalances and are predicted to be particularly severe for people on low incomes, who are more likely to have poorer health and are also more likely to be in insecure work without financial reserves. Other Equality Impact Assessments have also shown that lower income households are less likely to have a broadband connection, may lack access to smart devices (phones or tablets) or sufficient data, and may rely on libraries and other community resources now closed to make use of the internet. This may have left them without access to home learning materials, justice procedures, advice, information, job or benefits applications, shopping, and entertainment during the pandemic.

Data gaps identified and action taken

Gap:

No information was found about effective interventions to raise awareness of dementia in different socio-economic groups. There are few large scale studies that have looked at social inequality in dementia in Scotland.

Action:

The consultation for the equality impact assessment has included a focus socioeconomic inequality as part of wider inequality, including digital exclusion and rural/ remote location.

Source

Other - Digital Exclusion:

Addressing the digital divide has been highlighted as key to reducing health inequality. COVID-19 has seen an increasing move towards digital services, in social care, healthcare and general settings. However, this move may have left behind those who are digitally excluded, which is more likely to include those of lower socioeconomic status and older people. The move to digital services may not be suitable for many people with dementia or their carers.

Evidence gathered and Strength/quality of evidence

  • The NHS Widening Digital Participation Programme, delivered by NHS Digital, found that tackling the 'digital divide' is essential to reducing health inequality.
  • Digital Exclusion refers to both digital access (availability and confidence as well as available infrastructure), ability and affordability: a good Wi-Fi connection and the right equipment as well as the skills to use this equipment and being able to afford it. Digital exclusion intersects with other categories considered here. There can be connectivity issues (including but not only in) rural or remote areas, or there may be limitations in possible internet providers. People may have no workarounds to be able to use mobile technology. Those who are most likely to be digitally excluded are people and families on low incomes, people from minority ethnic communities, and those with additional challenges such as care leavers, disabled people, those who have a communication difficulty, sensory impaired, those shielding and older people. Research from Glasgow Disability Alliance for instance notes that disabled people are nearly 4 times as likely to be digitally excluded.
  • Evidence gathered for other EQIAs already suggests that older people are less likely to use the internet and digital devices than younger people, and when they do they can sometimes be less confident meaning they don't always benefit to the same degree.
  • Evidence gathered during our engagement sessions showed that unpaid carers may not have had access to the correct tech or necessary technical knowledge in order to maintain contact with the person with dementia they care for at points during the pandemic; though carer centres have worked hard during the pandemic to address this and many carers have used the time to live fund to buy IT equipment such as tablets.
  • Moreover, paid carers may not have the right tech or the have the required knowledge/ training to ensure family and friends can maintain contact with the person they are caring for.
  • Age Scotland noted that it is important not to make assumptions around people becoming more digitally savvy during the pandemic, or necessarily becoming more isolated through lack of tech access. A lot of people living with dementia are not using care tech or traditional IT care methods, but are happy to use voice activation devices. In line with digital Carers Centres services and support, Scotland adopted a digital approach during lockdown, which saw a huge increase in levels of engagement via Zoom for carers and removed a lot of the barriers to engagement. However, they felt that 'Zoom fatigue' is setting in for many people.
  • Digital exclusion may interact with protected characteristics, such as disability, and there may be specific obstacles for people with e.g. learning/intellectual disabilities having digital access.
  • Obstacles to digital access were outlined by People First Scotland at one engagement session, including availability and training gaps to facilitate family and paid carers in offering or accessing digital connection; insufficient funding for tech provided by benefits and lack of decision-making enabling digital connection. It was noted that, many people are online but that the psychological impact of COVID-19 has meant many are not in the right head space to try to learn something new or to cope with technological malfunctions. Any barrier to accessing online support quickly becomes a reason not to use it and for many, once they have had an unsuccessful attempt they may not try again, meaning there is a need to aim for the first connection on line to be successful so people will keep trying.
  • The need to get the right information out to people at the right time was emphasised at the engagement events, with best practice highlighted regarding carer groups looking up phone numbers and sending out packs to their groups to ensure accessibility. Other people want to still use telephone calls and on a landline. There needs to be options available to people, particularly as some people will never be comfortable with anything on-line, they are people who did not grow up with computers and will never be comfortable on-line no matter what we do. People using on-line need trained on how to get the message across to people they are engaging with, but dementia still traditionally poses a multi-layered series of barriers to accessing information online.

Data gaps identified and action taken

Gap:

There is a lack of literature about the impact of digital exclusion on those with dementia.

Action:

Questions were specifically asked about inequality at consultation engagement events around this strategy. Several respondents focused specifically on digital exclusion and its intersection with other equality factors, such as age. An engagement event focusing specifically on this theme was organised with relevant stakeholders as part of consultation on the equality impact assessment.

Source

Other - Rural and Remote locations:

COVID-19 has had a differential impact on those within rural or remote locations who have dementia or care for someone who does. Oftentimes this may intersect with digital exclusion, as access to a good broadband connection may be limited for those in these areas. In some rural or remote areas there has been an almost complete withdrawal of public transport during some periods of the pandemic and home deliveries - which may be vital for those with dementia or their carers living at home - may be more costly or difficult for those living in a rural or remote area.

Evidence gathered and Strength/quality of evidence

  • Rural areas are defined by the Scottish Government as those with less than 3,000 people. Accessibility is measured in terms of drive times to an urban area. Remote areas are those that are more than a 30 minute drive time (6-fold classification), or areas that have a drive time between 30 and 60 minutes (8-fold classification) from a Settlement with a population of 10,000 or more. 900,000 people live in rural locations in Scotland, one-third of whom live in remote-rural areas.
  • Evidence from our engagement sessions and from existing EQIAs shows that people who live in remote and rural communities may lack proper or good access to the internet, due to a lack of available tech and/or poor broadband connection.
  • Lack of broadband access in some areas was emphasised - some need special satellites as they have no broadband supply and this has continued throughout the pandemic. Some people don't even have a mobile phone signal, let alone 4G or Wi-Fi. This makes it difficult for them to use technological alternatives offered in place of face-to-face services. Income and infrastructure is key to digital access, as is capability and trust. There is a huge amount of demand for this, beyond available capacity: the Scottish Government had a £25 million grant to train 9,000 people, but up to 250,000 people expressed demand (though some were likely to have been double counted due to the bidding system).
  • The work of Connecting Scotland (CS) to address lack of devices, lack of affordability and lack of competence for people was noted; but so was the continuation of black spots, as this work is not tackled by CS. Superfast broadband and a 4G connection is key to technological access for care providers and care homes, yet many lack this access and have no plans to ensure this. CS have been leading a programme to provide iPads to care homes.
  • COVID-19 is likely to have impacted upon transport connectivity in rural and remote parts of Scotland in particular. In some rural or remote areas there has been an almost complete withdrawal of public transport during COVID-19. In some remote-rural locations, residents pay substantial amounts of money more than the mainland to access home deliveries, which many people have relied on during the pandemic.
  • At the engagement event, stakeholders expressed concern about there being too few dementia services available in remote areas, and those available having been cut. They felt COVID is being used as an excuse to strip back provision, but noted some examples of good services and people going an extra mile to help people - e.g. an organisation funded to provide befriending service over the telephone and some face to face when not able to be reached on phone - but also there is the other end of the spectrum where there is nothing available and no willingness to provide anything.
  • It was suggested that building resilience is key to being part of the community in rural/ remote areas, with an emphasis on 'peer support' alongside befriending or buddying. Particular challenges were noted for LGBT people in rural/ remote areas, with organisations such as the Far Out Equality Network aiming to support this group. 62% believe that LGBT people outside of Scotland's big cities face more inequality than those who live within and 51% of LGBT people living in rural areas have personally experienced prejudice or discrimination for being LGBT.

Data gaps identified and action taken

Gap:

There is a lack of literature about the impact of living in a rural/ remote area on those with dementia. There is also a lack of literature about the impacts of COVID-19 policy decisions on rural and remote areas, such as the impact of removing access to transport services on the rural economy and residents' wellbeing.

Action:

Questions were specifically asked about inequality at consultation engagement events around this strategy. Several respondents focused specifically on remote/ rural locations and their intersection with other equality factors, such as digital exclusion. An engagement event focusing specifically on this theme was organised with relevant stakeholders as part of consultation on the equality impact assessment.

The specific impact of COVID-19 on Scotland's transport services and the rural economy is set to be investigated by MSPs for The Scottish Parliament's Rural Economy and Connectivity Committee.

Source


Contact

Email: david.berry@gov.scot