Dementia strategy: island communities impact assessment

Data and evidence gathering

Methodology

The potential impacts of the strategy and delivery plan on people living with dementia and their care partners/unpaid carers were informed by an analysis of a range of published evidence and stakeholder engagement. We held and attended meetings, conversations, conferences and workshops with various stakeholders. We also held meetings with and sought input and advice from relevant colleagues in the Scottish Government and COSLA.

Our process for carrying out these impact assessments has focused on collaboration and participation and expanding our knowledge. The establishment of a National Lived Experience Panel, appointed by an independent group on behalf of the Scottish Government, has formed part of the formal governance which oversees the development (and subsequent delivery) of this strategy. Some members of the Lived Experience Panel live in rural and island communities, so their participation provides valuable insights for our ICIA. As well as working with the National Dementia Lived Experience Panel, we have and will continue to engage with pre-existing lived experience groups as reflected during the National Conversation and other delivery partners through our Strategy Delivery Group.

Findings around lifestyle factors/circumstances

Covid-19 Pandemic

A global survey of the impact of COVID on islands^[6], including Scottish Islands, found the potential for digital connectivity limited and in addition, as large parts of an increasingly elderly population may not be as comfortable using technology such as smartphones. This potentially compounded issues and lead to an increase in social isolation, considered to be a risk factor for the progression of dementia, and so in turn can exacerbate the progression of dementia symptoms.

Cost of Living and Deprivation

The main issues in rural areas include higher costs of living: access to services, lack of affordable housing and higher fuel costs^[7].

Feedback from those consulted for this assessment corroborated that cost of many amenities and activities are higher for people living in island communities than those living on the mainland. And that there are additional costs associated with living with dementia such as an increased dependence on taxis. A lack of choice and accessibility means that shopping, mobile phone services and broadband can be more expensive for people living in island communities compared to those on the mainland. The greater distances mean that day to day travel, postage, fuel, day-trips and holidays are also more expensive for people in rural and island communities.

Citizens Advice Scotland^[8] have identified issues of grid, utilities, digital and travel as key barriers for people in accessible rural small towns. Furthermore, a typical food basket can cost as much as 50% more on island communities in Scotland, while transport can be up to £30 a week more expensive due to longer distances for commuting and a higher price for petrol^[9].

Noting this, it is important to consider the link between deprivation and poorer health outcomes including potential risk for some dementias. The proportion of households experiencing low-income poverty living in rural areas of Scotland is estimated to be approximately 13%^[10]. Western Isles, Shetland and Orkney had no areas among the 20% most deprived in Scotland, while levels of deprivation had increased in Highland, albeit by no more than 2%^[11].

Connectivity and accessibility

According to the research from 2017 about the Islands (Scotland) Bill^[12], residents of islands rely on ferry crossings and air travel to reach the mainland and larger islands, and key services such as secondary and higher education, care, and medical services.

A lack of accessibility to employment, education and leisure opportunities can be made more difficult for someone with mobility issues, especially when transport options are limited. From consultation with our Lived Experience Panel, members noted that it was felt not being able to access these things infringed on people’s human rights.

Especially as bus services in rural and island communities can be unreliable, with buses only running rarely even when they are available, and timetables that often do not meet the needs of people living in the community. Furthermore, not all islands are served by buses and taxis are not always available^[13]. This is particular an issue for people living with dementia who are often no longer able or allowed to drive. We heard how people on islands rely heavily on neighbours, friends and families driving them as a primary means of transport.

The above data provides key insights and background on the experiences of those in island and rural communities, but the gaps in data availability, particularly in relation to islands data at a more detailed level than local authority level, and data relating specifically to how people living with dementia are affected, raise the importance of prioritising this in the Strategy and delivery plans and the value of directly engaging with island communities.

Findings relating to people’s dementia experience

Dementia risk

Research conducted^[14] in 2016 and supported by Alzheimer Scotland, found evidence that environmental risk factors seem to play a role in a person’s risk of developing dementia. Researchers previously found that dementia risk may be higher in the north compared to the south in Scotland. While they are not completely sure why this is the case, it is likely to relate, at least in part, to environmental risk factors.

In rural and island areas there tends to be an older age profile. Mid-2021 population data^[15] suggest island and rural communities have some of the highest proportions of people aged 65+, and some of the lowest proportions of people in the other age groups. Rural aging populations have been recognised globally as a critical policy issue^[16]. Increasing age is well established as the greatest known risk factor for dementia^[17] . Of the estimated 90,000 people with dementia in Scotland, only an estimated 3,000 are under the age of 65^[18] but it is not clear how many people of these live outside urban areas^[19]

An epidemiology study in 2012 of geographical variation in dementia^[20] found that any consideration of geographical variation of dementia must also include geographical variation of related conditions and risk factors. It also found variance in incidence across Scotland for cardiovascular and cerebrovascular diseases, and this variation is partly related to smoking (in both sexes), population density, deprivation, blood pressure and body mass index (in men).

An earlier study in 1995 of young onset dementia across the whole of Scotland^[21] looked at the geographical distribution of cases and found non-random distribution of cases of young onset Alzheimer’s disease but not vascular dementia. The study found that the pattern was partly, but not entirely, explained by kinship, suggesting that socio-environmental factors may also play a role in the aetiology of young onset dementia^[22].

There is also evidence^[23] of geographical variation in rates of dementia in affluent countries at a variety of geographical scales. Rural living is associated with an increased risk of Alzheimer disease, and there is a suggestion that early life rural living further increases this risk. However, this is currently not yet well understood The Delivery Plan notes the need to collect more data regarding geographical and socioeconomic factors relating to dementia.

Post diagnostic support (PDS)

According to data published by Public Health Scotland^[24], there were 8,915 people diagnosed and referred for dementia post diagnostic support (PDS) in 2021/22. Of those people referred in 2021/22 for post diagnostic support (PDS), 78.7% received a minimum of one year's support. Within Scotland, 47.7% of those estimated to be newly diagnosed with dementia in 2021/22 were referred for post diagnostic support (PDS). However, the data does not provide further detail, such as of potential rural/urban population discrepancies.

Though there is currently data collected on the number of people referred for Post diagnostic support (PDS) following a dementia diagnosis broken down by health board and local authority^[25], there is limited data on the number of people living with dementia irrespective of whether they receive PDS or more disaggregated or qualitative published and geographic data on the local population of people with dementia. To address this, the delivery plan has committed to better understand and ultimately improve the amount and quality of data collected, to ensure the circumstances are understood. The voices of those in island and rural communities will be considered as part of this process, and this impact assessment will inform what analysis is undertaken of future data.

Research from a study by Innes et al (2014)^[26] explores the reported difficulties and satisfactions with diagnostic processes and post diagnostic support (PDS) offered to people with dementia and their families living in the largest rural region in Scotland. Participant experiences in this study suggest increased efforts are required to meet diagnosis targets set by Government in this area and that post diagnostic support (PDS) needs to be developed and monitored to make sure that once a diagnosis is given people are then well-supported. The Delivery Plan commits to an independent evaluation of PDS policy and delivery to address areas of concern for our stakeholders.

Challenges

Efforts to understand dementia and social inclusion^[27] suggest that demographic factors in Scotland (growing older population, large proportion of older people living in rural areas due to out-migration of younger people, and people living longer) mean research specific to Scotland needs to be conducted regarding lived-experience in rural areas. Individually tailored services are required in rural areas to insure improvement in support. However, individually tailored services and person-centred support are recommended as best practice in dementia care, and should be provided for everyone, regardless of location. However, problems of distance and staff recruitment and few service options available compound the challenges of making high quality services available in rural and island areas.

Research from 2018^[28] acknowledges challenges for service providers when it comes to developing and evaluating services for people living with dementia in remote areas including organisational difficulties and lack of clear information about their communities and populations with dementia. It is important to understand that any new services in these areas will encounter, and need to address, challenges facing island and rural communities including distance, communication and workforce deployment issues.

Dementia deaths

According to the national Records of Scotland^[29] there were 6,491 deaths caused by Alzheimer’s disease and other dementias in Scotland in 2023, an increase of 3% (214 deaths) on 2022. The rate of mortality caused by Alzheimer’s disease and other dementias was 125 deaths per 100,000 people in 2023. This makes these conditions one of the leading causes of death in Scotland. The current rate of 125 deaths per 100,000 people is more than twice as high as it was in 2005 (60 deaths per 100,000).

After adjusting for age, deaths caused by Alzheimer’s disease and other dementias were 1.3 times as high in the most deprived areas of Scotland as in the least deprived areas. Inverclyde and Falkirk had the highest 5-year average mortality rates. The rates were lowest in the Scottish Borders, East Renfrewshire and North Ayrshire. The rates for Shetland and Orkney are lower than the Scottish average. However, the confidence interval around the rates for these areas is very wide, making the estimate less certain. This is likely due to the smaller populations in these areas. Considering urban and rural areas, there hasn’t been as clear a pattern over time and there doesn’t appear to be as strong a relationship when comparing changing levels of rurality and the rate of Alzheimer’s disease and other dementia deaths.

The National Conversation

The range of voices we heard from in our National Conversation^[30], whether it be in writing, online or in-person, provided an incredibly strong basis for considerations as to what the new Dementia Strategy for Scotland can and needs to achieve in island and rural communities.

The engagement work was led and delivered by Scottish Government and COSLA, working with several organisations who went to great lengths to engage communities across Scotland in their communities, where they feel most comfortable and to enable their voices to be heard. Such efforts have been essential in broadening out this conversation on what a new Strategy could look like and what needs to be prioritised in the first 2-year delivery plan, and we will continue to encourage these efforts as we progress from Strategy and its outcomes to delivery.

An emerging theme from the National Conversation and delivery subgroups was the need to tackle “postcode lotteries”. Access to timely, person-centred diagnosis that is consistent and equitable throughout Scotland but allows for flexibility to suit the locality is committed to as a priority by the strategy. This includes diagnosis delivered by a broader range of those professionally qualified than current arrangements and delivery of diagnosis in a wider range of settings such as community hubs and care homes. However, the availability and provision of support, including the commitment of a minimum of 12 months Post Diagnostic Support (PDS), is felt to be inconsistent in island and rural communities. Recognising the principles of good support and enabling these to be delivered to fit local need was seen as a means of addressing negative local variation.

Inconsistencies in diagnostic services and care were also raised as an issue facing island and rural communities. It was felt this was often due to a lack of awareness from professionals of the symptoms of dementia, especially for those with young onset dementia. There was felt to be a lack of qualified professionals to diagnose (particularly in rural areas), driven in part by the continued ‘medicalised’ nature of the diagnosis process, that it continued to be based around a series of tests which were not considered accessible for many, and did not capture cognitive deterioration over time. The lack of a national screening programme and campaign was also cited as a concern, as it led to people needing to ‘know’ themselves what symptoms to look for.

Dementia-friendly communities were seen as a critical initiative for building connections across people and place, fitting with wider policy initiatives (such as 20-minute neighbourhoods) and has been agreed as a priority in the Delivery Plan.

This included the Meeting Centres model, with many participants in our National Conversation calling for greater support for these. Learning from communities that understand, welcome and are inclusive of people living with dementia was urged.