The Knowledge Exchange Blog

The official blog of The Knowledge Exchange from Idox

Helping people to reconnect: positive projects for people with dementia

This Photo is licensed under CC BY Via Microsoft Word images

Every three minutes, someone in the UK develops dementia. Over 850,00 people in the UK are currently living with a form of the disease; 40,000 of these are people under the age of 65.  This week (20th– 26th May) is Dementia Action Week 2019. This year the focus is on encouraging people to talk about dementia, and to talk to people with dementia in order to help tackle loneliness and isolation among those who suffer from the condition, as well as to raise awareness and improve understanding around the condition and the impact it can have.

The power of music

You may have recently come across the BBC programme featuring Line of Duty’s Vicky McClure Our Dementia Choir (if you haven’t you should try and find a copy).  The documentary follows a group of people who suffer from varying degrees and types of dementia and highlights in sometimes painfully sad detail the changes and challenges that can occur when someone develops the disease. However, it also shows the great joy and relief that music brings to dementia sufferers and their families. We blogged a few years ago about the benefits of music therapy in dementia care – and since then the literature and research on its usage in different settings has only grown.

Research shows that music, in various forms can help encourage participation and trigger positive associations which can be really helpful for people suffering from dementia, particularly if they feel like a lot of other things may have changed. In our previous blog we highlighted a Care Inspectorate backed scheme called ‘playlist for life’ which encourages care homes to integrate music into their care for patients with dementia. Moving beyond just allocating a time to place headphones onto a patient and leaving them to listen alone (although at times this may be helpful too), the aim is for music to be a vehicle for connected care. It allows carers to use music as a tool to find out more about the person they are caring for and encourage them to engage through the music.

Tackling isolation with art, culture and the natural environment

Research has shown that it is not only music that can have a positive impact on quality of life for people with dementia. Painting and drawing, making use of the natural surroundings by encouraging gardening or light walking in safe spaces, and games like dominoes and draughts can all help in their own way to improve the quality of life for people living with dementia and provide an opportunity for loved ones to re-connect.

In a 2014 study researchers examined the experiences of people with dementia and their carers when they participated in an 8 week programme based in an art gallery designed specifically to tackle social isolation and improve quality of life for both the person suffering from dementia and their carer. The study found that while the impact in terms of qualitative measures was negligible, participants were unanimous in their enjoyment and satisfaction with the programme. They highlighted that the interventions at the galleries helped to foster social inclusion and social engagement, enhance the caring relationship between the carers and people with dementia, and stimulate cognitive processes of attention and concentration. In a similar study, looking at the impact of art and gallery settings and programmes delivered within these settings, similarly positive emotional effects on study participants were found.

In Liverpool, they are making the most of their city landscape and the fact that specific locations, building and objects around the city can act as positive triggers for people who suffer from dementia, stimulating memory and interest. Those individuals who are mobile enough can participate in “memory walks” (different from the Memory Walks convened by the Alzheimer’s Society, which are sponsored walks designed to help raise money and offer a public show of support for people with the illness). This not only helps to improve physical activity, it can also be an opportunity for people with dementia to connect with other people as the walks are usually carried out in small groups, they are also linked to befriending schemes across the city to help reduce social isolation among multiple groups.

Similarly, many care homes now also promote interaction with nature and outside spaces for residents with dementia, with many developing specifically landscaped “sensory” gardens for residents, while other innovative supported living accommodation projects have gone a step further and created entire villages on site, which allows residents to perform tasks such as shopping or visiting a hairdresser. (This project is based in the Netherlands, but there are suggestions that a similar scheme could also come to the UK in 2020.)

VR and creating virtual experiences for people

Using digital technologies has also become increasingly popular, particularly in care homes. Apps and VR headsets which allow people to be immersed in an experience they perhaps once enjoyed, such as flying (if for example they had previously been a pilot or air crew) or driving have been shown to have a significant positive impact on people’s wellbeing allowing them to reconnect with their past and memories and freeing them from the sense of being trapped and losing their independence which can sometimes come with moving away from home into supported accommodation.

Tablet computers and touchscreen technology can also sometimes be easier for people with dementia to use as they do not require the same level of dexterity as writing. Apps have been developed which can help with word association or use pictures which can be helpful in allowing people with dementia to communicate when their use of language becomes more of a challenge. While the technology its self is relatively new, research has shown definite scope and benefit of further development of this in the future, as well as relevant training for staff and carers on digital literacy to help support users.

A support to clinical interventions

Dementia is a cruel illness – 1 in 3 of us in the UK will develop a form of the condition at some point in our lives. As yet there is no cure and as the population ages, and life expectancy improves more generally, the number of cases is expected to rise dramatically in the coming years. However, where science is trying to cure, art and culture is trying to supplement and support the clinical interventions and, where possible, provide opportunities to improve the quality of life for people suffering with the condition and provide opportunities for people to re-connect with loved ones.

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Museums as facilitators of health and wellbeing in communities

GNM Hancock, Newcastle

Great North Museum Hanckock, Copyright Rebecca Jackson

It’s estimated that there are over 2500 museums in the UK, ranging from world-famous collections in major cities to small local ones on niche themes. Over 50% of adults have visited a museum or gallery in the last year and there were an estimated 7.5 million visits by children and young people under the age of 18 to the major museums in England.

As well as their educational and leisure value, and their role as drivers of the tourism economy, there is a growing body of research which is considering the wider societal role of museums and in particular, their potential positive impact on health and wellbeing.

Museums and the rise of social prescribing

Within health and social care, we have seen increasing recognition and interest in the role of psycho-social and socio-economic determinants on health and wellbeing. Treatments now often look at the whole person and their lifestyle, not just at the specific medical condition to be treated. This awareness of the impact of lifestyle has led us to view spaces like museums and theatres in a new way and consider how they can be used as a tool to help people to live well.

March 14th was social prescribing day in the UK. And Museums on Prescription is one of a number of culture-led projects which encourage people to use assets in their local communities such as museums, galleries and theatres to help manage conditions linked to depression and social isolation, in combination with traditional clinical medicine.

Arts-for-health settings can have an impact across a number of different areas, including supporting children who have been exposed to trauma and abuse, helping communities integrate and improve social cohesion through the co-production of exhibitions, and helping support people with mental or cognitive illnesses, as well as those who suffer from dementia and Alzheimer’s.

V&A Dundee

V&A Dundee, Copyright Rebecca Jackson

Helping people feel better

As the number of projects increase so does the evidence of positive benefits. There is a growing body of literature highlighting examples of how cultural experiences are supporting both physical and mental health.

A report from Art Fund looking at the calming impact of museums and galleries found that 63% of people surveyed have (at some point) used a visit to a museum or gallery to ‘de-stress’, however, only 6% visit a museum or gallery regularly (at least once a month). Over two thirds of survey respondents (67%) agreed that taking time out for ourselves and choosing to pursue a leisure activity is good for our personal wellbeing and this is where museums and galleries, along with a whole host of other providers like theatres, music venues, public gardens and parks can step in.

Funding is a challenge

A report (2018) from the English Civic Museums Network highlights that services often deemed  “non-essential” (like museums and libraries) actually encourage and foster personal and communal resilience: they stop the crime, the illness, the loneliness from happening in the first place.

However, despite the significant and positive preventative role that participation in cultural activities can play, over the past five years spending on culture in England and Wales has fallen by over 30%, and this has had an impact on museums and the services they can provide.

Natural History Museum, London

Natural History Museum, London, Copyright Rebecca Jackson

Galleries and museums must keep striving to do more

The growing realisation of the potential of museums and galleries to have a positive impact on the health and wellbeing of communities presents a significant opportunity for them to develop programmes and exhibitions which reflect the diversity of experiences within communities and look to develop new ways to engage new audiences. Ensuring that people feel represented and that exhibitions appeal to a broad base of the community is also important in making sure people feel they are able to visit exhibitions and can feel the benefits of doing so.

In their 2015 report, the National Alliance for Museums, Health and Wellbeing, led by UCL, outlined the priorities of the alliance and showcased some examples of the work being done by partner organisations. In February 2019 it was announced that some schools in London are planning to give pupils “theatre vouchers” which entitles them to one free theatre visit per year. Museums themselves are also trying to do more to help engage members of the community and encourage them to engage with new exhibitions.

Are healthy people more culturally active, or does being culturally active make people healthier?

Museums and galleries have the potential to make an enormous contribution to improving people’s lives and enhancing physical health and mental wellbeing. The body of research around the role cultural activities like attending museums can have on health and wellbeing is growing, but there is still scope to do more, and work is ongoing with a number of high profile museums across the UK to promote the link between cultural activities and health and wellbeing.

The question of which comes first – being well initially which allows you be more culturally active, or cultural activities facilitating wellbeing in their own right – will be discussed and disputed by academics and clinicians. But the existing studies highlight the significant positive impact that engaging with museums and exhibitions has had on study participants, particularly those who suffer from mental ill health or degenerative cognitive diseases like dementia.

Museums and galleries, it is clear, have a far greater communal role to play and can evidence their value far beyond being a source of knowledge transfer or a leisure activity. Museum curators and funders need to recognise this as they prepare and plan for exhibitions and outreach projects in the future and clinicians need to be aware of the potential positive impacts for patients when considering care and treatment plans.


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Reeling in the year: a look back at 2018

It’s been another busy year for The Knowledge Exchange Blog. We’ve covered a variety of subjects, from housing and the environment to education and planning. So as the year draws to a close, now’s a good time to reflect on some of the subjects we’ve been blogging about during 2018.

Bibliotheraphy, walkability and family learning

We started the year with health and wellbeing in mind. Our first blog post of 2018 highlighted the increasing application of “bibliotherapy”:

“The Reading Agency’s Books on Prescription scheme has been running nationally in England since 2013 and since it started has been expanded to cover Books on Prescription for common mental health conditions, Books on Prescription for dementia, Reading Well for young people and Reading Well for long term conditions. 635,000 people are estimated to have benefited from the schemes.”

In February, we blogged about family learning, where parents engage in learning activities with their children. This can involve organised programmes such as Booksmart, but activities such as reading to children or singing with them can also be described as family learning:

Research from the National Literacy Trust, suggests that “parental involvement in their child’s reading has been found to be the most important determinant of language and emergent literacy”.

In recent years, growing numbers of cities and towns have introduced “shared spaces”, where pedestrians, cyclists and drivers share the same, deregulated space. As we reported in March, the practice has proved divisive, with supporters claiming that shared spaces can improve the urban environment, revitalise town centres, and reduce congestion, while opponents believe that shared space schemes – particularly the removal of kerbs and crossings – are dangerous and exclusionary for vulnerable groups of pedestrians, people with disabilities and those with reduced mobility.

In April, we took the opportunity to promote the Idox Information Service, highlighting a selection of the hundreds of items added to our database since the beginning of 2018. All members of the Idox Information Service have access to the Idox database, which contains thousands of reports and journal articles on public and social policy.

Voters, apprentices and city trees

Local elections in May prompted us to blog about the voting rights of those with age related degenerative mental conditions such as dementia and Alzheimer’s.

“Many people with dementia still hold strong political feelings, and know their own opinion when it comes to voting for political parties or in a referendum. However, the process of voting can often present them with specific challenges. It is up to local authority teams and their election partners to make the process as transparent and easy for people with dementia and Alzheimer’s as possible. Specific challenges include not spoiling the ballot, and the ability to write/ see the ballot paper and process the information quickly enough.”

A year after the launch of the government’s Apprenticeship Levy in June, we highlighted a report from the Reform think tank which suggested that significant reforms were needed to improve England’s apprenticeship system. Among the recommended changes were a renewed focus on quality over quantity, removal of the 10% employer co-investment requirement and making Ofqual the sole quality assurance body for maintaining apprenticeship standards.

The shortage of affordable housing continues to exercise the minds of policy makers, and in July we blogged about its impact on the private rented sector:

“In many cases people view the private rented sector as being a stop gap for those not able to get social housing, and not able to afford a deposit for a mortgage. Although in many instances they may be right, the demographic of those renting privately now is changing, and becoming more and more varied year on year, with many young professionals and families with children now renting privately.”

The long, hot summer of 2018 was one to remember, but its effect on air quality in urban areas underlined the need to combat the pollution in our air. In August, we blogged about an innovation that could help to clear the air:

“Designed by a German startup, a City Tree is a “living wall” of irrigated mosses with the pollution-absorbing power of almost 300 trees. A rainwater-collection unit is built into the City Tree, as well as a nutrient tank and irrigation system, allowing the assembly to water itself.”

Planning, polarisation and liveable cities

September saw another highly successful Scottish Planning and Environmental Law conference. It opened with a thought-provoking presentation by Greg Lloyd, professor Emeritus at Ulster University, and visiting professor at Wageningen University in the Netherlands, who challenged delegates to consider what might happen if the current planning system were to be abolished altogether, to clear the way for a new and more fit-for-purpose planning system.

In October, we focused on the ever-increasing job polarisation affecting the labour market:

In the EU, data shows that between 2002-2014 medium skilled routine jobs declined by 8.9%, whilst high skilled roles rose by 5.4%, and low skilled jobs grew marginally (0.1%). As a consequence, wage inequalities have grown.”

More than half the world’s population now lives in urban areas, presenting significant challenges to local authorities who have to try and make their cities work for everyone. In November, we reported from The Liveable City conference in Edinburgh, which showcased ideas from the UK and Denmark on how to make cities more attractive for residents and visitors:

“A great example of the reinvention of a post-industrial area came from Ian Manson, Chief Executive of Clyde Gateway, Scotland’s biggest and most ambitious regeneration programme. When it comes to recovering from the demise of old industries, the East End of Glasgow has seen many false dawns. As Ian explained, when Clyde Gateway was launched ten years ago, the local community were sceptical about the programme’s ambitions. But they were also ready to engage with the project. A decade on, the area has undergone significant physical generation, but more importantly this has taken place in partnership with the local people.”

Although much has been made of the government’s claim that austerity is coming to an end, many local authorities are still struggling to provide services within tight financial constraints. One of our final blogs this year reported on local councils that are selling their assets to generate revenue:

“In a bid to increase affordable housing supply, for example, Leicester City Council has sold council land worth more than £5m for less than £10 as part of deals with housing associations.”

Brexit means….

Overshadowing much of public policy in 2018 has been the UK’s decision to leave the European Union. Our blog posts have reflected the uncertainties posed by Brexit with regard to science and technology, local authority funding and academic research.

As we enter 2019, those uncertainties remain, and what actually happens is still impossible to predict. As always, we’ll continue to blog about public policy and practice, and try to make sense of the important issues, based on evidence, facts and research.

To all our readers, a very happy Christmas, and our best wishes for a peaceful and prosperous new year.

Dementia and the right to vote

On 3rd May 2018 voters in England will go to the polls in local elections. These elections will decide the make-up of local and borough councils across the UK, as well as some additional direct elections for the Mayoralties of Hackney, Lewisham, Newham, Tower Hamlets and Watford.

As the population ages, questions arise over the ability and voting rights of those with age related degenerative mental conditions such as dementia and Alzheimer’s. Formal enquiries to council election teams, and general Google searches about the legal rights of someone with dementia to vote are increasing in number.

A dementia diagnosis does not alter a person’s right to vote. The Mental Capacity Act, which provides a framework for making decisions on behalf of people who lack capacity to make a decision, does not apply to voting. This means that a lack of mental capacity does not stop someone from being able to vote. It is up to the individual to decide if they want to vote. However, challenges can sometimes arise, if for example relatives vote for the individual, rather than on their behalf, voting for who they “think” the individual would have voted for, rather than who the individual themselves have expressed a wish to vote for.

This grey area can sometimes present challenges, especially as often this goes on in private. However, there are steps that can be taken to make voting as transparent as possible, and make the process of voting as accessible as possible for people with dementia (and other disabilities).

Image by secretlondon123, via Creative Commons

Physical adaptations

Physical adaptations can be made to the polling environment to make it more accessible for voters with dementia and Alzheimer’s. While there is a responsibility to make sure that polling stations are accessible to all, some adaptations can sometimes be overlooked, or are not made as obvious as they could be. Making polling stations “dementia friendly” can require just a few short adaptations, including perhaps a specific polling booth which uses labels like “in” and “out” and “pencil” in the booth itself.

Training for polling station staff on understanding how to react to and deal with voters who attend polling stations who have dementia is also seen as very important. In particular, there may be those who may need a carer to enter into the polling station with them. Poll station staff should be able to direct such voters in an appropriate way, regarding how to vote appropriately, especially if there are multiple elections happening on one day, with multiple ballot papers. Polling station staff should also be aware that they are able to help the voter to mark the paper (as the voter chooses) if for some reason they are unable to mark the page or hold the pencil themselves.

Removing additional barriers to voting such as reminding the individual to attend their polling station on the right day, or providing transport for those who are not mobile or do not know how to get to their polling station can also help make the process of voting in person, on the day a more pleasant experience for people suffering from dementia or Alzheimer’s.

Postal or proxy votes: voting remotely from home

Increasing awareness of postal and proxy voting is another way that people with dementia and Alzheimer’s could exercise their right to vote without causing distress or confusion (which can sometimes be instigated by physically attending a polling station).

Postal voting allows the individual to vote from home and submit their ballot (and accompanying postal vote statement) via post. Voting by post can help reduce the potential stresses of an unfamiliar environment like the polling station. A signature is usually required on a postal vote, for security reasons, but if a voter is unable to sign their name, or if their signature varies a lot, then they can ask for a waiver. (If you want to do this, contact your local registration officer and they will help you, usually by sending you a waiver request form.)

A proxy vote allows the voter to nominate another person to vote on their behalf. A proxy does not make the decision about who to vote for on behalf of the person, but rather votes for who they are instructed to vote for by the original voter.

Guidance from the electoral commission has also been issued for Electoral Registration Officers (EROs), with regard to assisted applications to vote, and what can and can’t be done on behalf of a voter. This includes the presumption that a person has capacity. In addition, residents of care homes can be registered to vote by care home managers, who can complete an application for all residents, but again, cannot vote on their behalf (unless they are a registered proxy for the voter).

Graphic design image: three padlocks in front of a futuristic city.

Challenges and opportunities in the future

Additional challenges could be presented by the development of electronic voting. However, this could also be seen as an opportunity to create a voting system which is actually more straight forward and is easier to navigate for people with multiple disabilities, including dementia.

Estonia has one of the best developed e-voting systems in the world, with voting linked to a national digital ID card which contains photos and digital copies of fingerprints for additional security. The system can make the process of voting clearer, and also make it easier for people with a limited range of movement to vote themselves. However, there are a number of questions which have been raised as to whether this would be a feasible option in Britain.

Some have suggested it would not actually make voting any easier, that it would require a major overhaul of voting systems and the transfer of a lot of data and information, and that, given the recent uncertainty around cyber-attacks, there can be little certainty, with current software, that the process could be completely reliable and secure.

Final thoughts

Many people with dementia still hold strong political feelings, and know their own opinion when it comes to voting for political parties or in a referendum. However, the process of voting can often present them with specific challenges. It is up to local authority teams and their election partners to make the process as transparent and easy for people with dementia and Alzheimer’s as possible. Specific challenges include not spoiling the ballot, and the ability to write/ see the ballot paper and process the information quickly enough.

In 2017 the government launched a Call for Evidence asking for views on how people with disabilities experience registering to vote and voting itself. This included people with dementia and Alzheimer’s, although the results of this are as yet unpublished.

It is clear that, exercising your right to vote is something that should be protected for all citizens, but with the growing challenges raised by an ageing population, the time may be coming for the UK to have a major rethink about how it votes, and what changes could be made to make this easier for people with conditions such as Alzheimer’s and dementia.


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Housing models for the future

Housing is one of the challenges of our time. The task for architects and designers is to create affordable, robust housing that can accommodate the needs of a rapidly growing, but also ageing population. And it’s not as easy as simply building. The demands and expectations on house builders to also be community builders and the architects of mental and physical wellbeing through design have led architects and designers to consider alternative ways to house us in the future. This includes innovative use of materials and construction methods, addressing the issue of financing through co-operative living models and using bespoke design to create lifetime homes which can be adapted to accommodate the changing needs of our population.

Large-scale development

One of the big challenges for urban areas is large-scale development strategies for designing and delivering housing to meet need. For developers and planners going forward there are a number of factors to consider: the type of investment introduced to an area; how the schemes fit with a wider development plan for the city; and the importance of engaging the community in any plans to develop or regenerate an area.

“Placemaking”, not just house building is central to large scale development discussions, emphasising to planners, architects and developers the fact that they are not just building houses, but creating communities. As a result, designers and developers should be mindful of their important role in community building, to build the right sort of homes in the right places, at affordable prices and with a legacy in mind. They should, create high quality, long lasting units, which will stand the test of time but that also can be easily adapted to accommodate people’s changing needs.

Alternative construction and design

Innovative models and options for future builds have been discussed for a number of years but they are becoming an increasingly mainstream way to build affordable housing that meets the current need, particularly of students and young professionals, and of older populations looking to downsize or move into assisted care accommodation.

Offsite manufacture or modular homes  Offsite manufacture of timber framed houses is becoming increasingly common, with the constituent pieces of the house manufactured off site, then transported to the site and constructed on a concrete block where foundations and services such as plumbing have already been created. Offsite housing can either be open panel, which requires the finishing such as bathroom and kitchen installation to be done on site, or closed panel which provide the entire section complete with decoration and flooring (this is becoming a common way to build cheap, efficient student housing).

Custom build  Custom build projects are similar to self-build in that they give clients flexibility to select their own design and layout, However, custom build provides slightly more structure and certainty which can make it easier when considering elements like financing and planning applications. In essence, customers select the spec of their house in the same way they might make custom modifications to a car.

Build to rent  This model has been adapted from the United States, where build to rent is popular. The model is based on self-contained flats, with central and shared amenities, entrance and communal space. Designed to attract graduates and young professionals, these are being increasingly designed using a “user first” approach. Developers identify the sort of person they want to live in the development, identify what sort of things they might look for in a development, including floor type, furniture, layout, amenities, gadgets, and then build the development around that.

Dementia friendly – Building homes that are safe and affordable, but allow for independence in old age, is one of the major demands on house builders currently. Housing stock is seen as not suitable for current need, but building bespoke sites for people with illnesses like dementia has been seen as a bit of a niche previously. Virtual Reality (VR) is being used by some architects and developers to try to help them understand the needs and requirements of people with dementia and how they can build homes suitable for them to be able to live as independent and full lives as possible. Building dementia friendly homes not only means making them accessible and open plan, but also adapting the layout, adding signage where appropriate and if possible locating the homes within a wider community development. Dementia villages like those seen in Amsterdam are being used as the model for this.

Co-housing

Co- housing offers an alternative to communities in Scotland, and while lessons can be learned from elsewhere in Europe, where co- housing models have been successful, there are also pockets of good and emerging practice in the UK too. More traditional examples include Berlin, where almost 1 in 10 new homes follow the Baugruppe model, and Amsterdam (centraal wonen) where some of the oldest co-housing projects originate. In Denmark, 8% of households use co-housing models.

Co-housing provides the opportunity for groups of people to come together and form a community which is created and run by its residents. Each household has a self-contained, private home as well as shared community space. Residents come together to manage their community, share activities, and regularly eat together. A “Self-build Cooperative Group” is a joint venture between several private households who plan and build their own house together. Usually they are supported by an architect. Often co- housing groups are able to realise high-quality living space at prices below local market rates, although it is not really considered suitable for large-scale development within the current UK market.

Opportunities for a new way forward

Practitioners are often challenged to push the boundaries of design and building in their field. Looking to new models for future building design provides an opportunity to think creatively about alternative uses of materials and space and to consider options for construction, funding and investment in the built environment that challenge the norm. Learning lessons and exchanging ideas from elsewhere, architects and planners have the opportunity to come together to consider how the built environment in Scotland can help to create places  not just buildings  and how this can contribute positively to the wider wellbeing and happiness of people living in Scotland in the future.


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“A new journey”: creating a dementia-friendly public transport system

People diagnosed with dementia can live independently for many years – in fact, 1 in 3 people with dementia are still able to drive safely.  However, as the disease progresses, people with dementia must eventually stop driving.  Public transport can be a good alternative to driving for those in the early stages of dementia, enabling them to stay connected with their families, friends and local communities, and provide access to healthcare.

Indeed, the provision of easily accessible public transport options is a key aspect of dementia-friendly communities.  It is difficult to overstate its importance:

“If I didn’t have coping strategies to remain independent and mobile I’d be very lonely and soon sink into depression. Travel brings normality to an often abnormal life” Wendy Mitchell, recording a Dementia Diary for Upstream

However, the challenges faced by people with dementia mean that travelling by public transport can be daunting.  This is because dementia affects more than just memory.  Environments that are noisy and busy can be extremely disorientating for people with dementia, particularly when there are added time-sensitive elements such as bus or train times.

People with dementia often lose the confidence to travel.  They may experience difficulties purchasing the correct tickets, become confused by different fares or travel options, or feel hurried or pressured.  They may feel anxious or unsafe, for example, when becoming separated from their luggage or they may have a fear of becoming lost, or getting off at the wrong stop/station.

In addition to the cognitive, emotional and sensory challenges faced by people with dementia when travelling, there are a number of additional barriers.  These include:

  • Difficulties with journey planning
  • The use of fast changing technology which can exclude certain groups of people
  • A lack of service integration
  • Staff with limited awareness of the needs of people with dementia
  • Poor, inconsistent or confusing signage – or unclear rules regarding reserved seats/spaces

Policy and practice

The UK has set out the goal of becoming the best country in the world for people with dementia by 2020.  It has made some significant steps forward – currently, there are now over 200 communities working towards becoming ‘dementia friendly’.

In regards to transport improvements specifically, earlier this year, the Bus Services Act gained royal assent in England.  The Act provides powers to ensure that buses make both audible and visual announcements about the route and the next stop.  These reminders can help to reassure people with dementia.  The government has committed to work alongside the bus industry, passengers and disability groups to develop the policy further.

The government is also currently consulting on a draft ‘Accessibility Action Plan’, which addresses the barriers faced by people with disabilities using public transport, including a focus on hidden disabilities, such as dementia.  It also commits to updating existing guidance on ‘inclusive mobility’ to incorporate current knowledge and understanding of the needs of those with hidden disabilities such as dementia.

Involving people with dementia in service design

Involving people with dementia in the design of services can help to ensure that their needs are addressed.  Upstream is a project that does just that.  It helps to give people living with dementia across Scotland a voice in the design of future mobility services.

Projects have involved visiting various groups in the Western Isles to learn about the challenges of island transport, workshops to gather insights about travel with Dementia Friendly East Lothian and the North Berwick Coastal Area Partnership; and developing training programmes in conjunction with transport providers.  They have produced a report of their work so far.

Use of technology

The expansion of real time audio and visual information as set out in the Bus Services Act provides a good example of where technology can be used to make transport more accessible for people with dementia and other disabilities.

Other ways in which technology may help include the expansion of live departure boards at bus stops and increasing the use of journey planners – either online or via the telephone.  Apps may also have the potential to help organise shared modes of transport for groups of people in rural areas, and in the future, driverless cars may offer an additional transport option for people living with dementia.

Improved awareness of dementia among travel staff

Improving awareness of dementia among transport staff, and developing training programmes on how to respond to the needs of passengers with dementia, is another key way in which services can be improved.

For example, East Anglia Trains, has worked with the Dementia Society to deliver a dementia-awareness training pilot for staff at four of its stations, and plans to roll this out to all East Anglia staff. Arriva Rail Northern has also announced funding to develop the Bentham Line from Leeds to Lancaster and Morecambe as a ‘centre of excellence’ for people with dementia.

Transport assistance cards are another example of possible ways to improve transport for people with dementia. These cards record details of an individual’s needs so that the individual can show the card privately to the driver or other travel staff as a means of asking for extra assistance. Many individual transport operators and local authorities across the country already issue such cards.  Standardising these schemes across the UK may be one way to help improve people’s confidence when using public transport.

Future developments

While these initiatives are making a significant impact, there is still much to do.  If the growing number of people living with dementia are to maintain their independence, then it is essential that transport services become more dementia-friendly. Bringing together the shared knowledge and experiences of those living with dementia, and the skills and experience of professionals involved in the design and delivery of transport services will help to create a more inclusive, person-centred public transport system.

Dr Joy Watson, an ambassador for the Alzheimer’s Society who herself has been diagnosed with dementia, sets out an admirable goal:

A diagnosis of dementia is not the end of the road, but the beginning of a new journey.  Some people need a little more help to take the first steps, and if I can contribute to them living well, then my mission is fulfilled.”


Going grey behind bars: meeting the care needs of older people in prisons

The population is ageing. People are living longer, and are in need of greater levels of care than ever before. But how is this increase in life expectancy and demand for care being met in prisons? Our prison population is also ageing, at a time when the sector is under increasing pressure, low staff numbers, higher levels of prison violence and disorder, and poor, crowded living conditions. In an environment which is largely designed to support young, able bodied men, how are prison staff and care teams liaising to help meet the needs of older prisoners?

A care plan for ageing prisoners

A report published in 2017 by the Scottish Prison Service called for a specific care plan for ageing prisoners to react to and provide planning to reflect the change in demographic of the prison population. The report found that between 2010 and 2016, the number of men aged over 50 in Scotland’s prison population rose by more than 60%, from 603 to 988. According to a Ministry of Justice report on prison population, the number of inmates aged over 50 is projected to grow from 12,700 to 13,900 by the end of June 2020, a rise of 9.5%, while the number of over-60s behind bars will grow by 20% from 4,500 to 5,400 over the same period.

In July 2017 Prisons and Probation Ombudsman produced the Thematic Review: Older Prisoners, which stated that HM Prison and Probation Service needs a national strategy to address the needs of the increasing numbers of elderly prisoners. It highlighted six areas where lessons still needed to be learned: healthcare and diagnosis, restraints, end-of-life care, family involvement, early release and dementia, and complex needs.

The difficulties older prisoners face on prison estates are far reaching. Not only are there physical barriers to moving around and living within a prison environment, but the increased mental health and social care burden is significant, as well as the potential need to begin end-of-life care. Many prison inmates suffer from multiple, longstanding and complex conditions, including addiction, and these conditions are exacerbated by a phenomenon known as “accelerated ageing”, which suggests that prisoners age on average 10 years faster than people of the same age in the wider community.

While some prisons have effective care plans which allow older prisoners to live with dignity, often older prisoners rely on the goodwill of officers and fellow inmates to meet the gaps in their care needs. And while in England and Wales the Care Act means that, a statutory requirement to provide care lies with the local authority within which the prison is located, this is not a guarantee. Calls have been made for care planning in prisons to become more robust, with minimum standards of care and a clear pathway of delivery, with accountability and responsibility of specific bodies being made explicit.

 

Prison staff, care teams and the NHS in partnership

Any care planning for older people needs input from a number of different sources, and care planning for older people in prison is no different. It will require input from professionals across health, social care, and housing and the criminal justice system as well as wider coordination support and legislative and financial backing from central and local government.

Prisoners with physical disabilities or diseases such as dementia need specialist care at a level that standard prison officers cannot give. Research has suggested that prison staff are being expected to shoulder this extra burden, often having to perform beyond their duty to care for and look for signs of degeneration in prisoners, particularly those who show signs of Alzheimer’s and dementia.

A number of research studies have looked at the provision of training and the use of additional, multi-agency staff to try to bridge the gap in care for elderly prisoners. In 2013 a review was conducted of multiple prisons, including some in England, the USA and Japan, which examined the training available on each estate for prisoners with dementia and similar conditions.

A number of schemes have been trialled, including extra training for staff, the allocation of specific wings or cells adapted to cater to the specific needs of older and vulnerable prisoners, and the use of peer to peer buddying or befriending services to help with care and support. Some prisons have also trialled the introduction of “dementia champions” to identify and support those with early signs of dementia or Alzheimer’s.

Extra challenges on release

As well as social care needs inside prison, specific rehabilitative needs of older prisoners being released from prison is also something that prison charities and reform bodies are keen to raise onto the agenda. A report from the Prison Reform Trust in 2016 highlighted the challenges of rehabilitative and parole needs of older prisoners, commenting that older people released from prison are being “set up to fail” by a lack of adequate provision to meet their health and social care needs on release. It highlights the limited and inconsistent housing, employment, debt and substance abuse advice available specifically for older offenders and suggest that their particularly vulnerable position puts them at risk of serious harm or reoffending.

Final thoughts

The population of older prisoners in our prisons is growing, and it is clear that a comprehensive strategy is needed to ensure that the specific, and at times unique care needs of these prisoners are met. This will mean greater cooperation from social care, health and criminal justice agencies, but will also mean reassessing how we think about social care, how it should be delivered and funded. The needs of older prisoners go beyond physical adaptations, to mental health, dealing with social isolation, the onset of chronic illnesses and at times the provision and planning of end of life care.

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Helping people with dementia to live well through good urban design

Planning for an ageing population: some key considerations

Co-production in the criminal justice system

Helping people with dementia to live well through good urban design

Earlier this year, the Royal Town Planning Institute (RTPI) published their first practice note on how good planning can play a stronger role in the creation of better environments for people living with dementia.

It summarises good practice guidance from Oxford Brookes University, the Alzheimer’s Society and the Scottish Government, among others.

Living with dementia

According to the Alzheimer’s Society, there are currently around 850,000 people living with some form of dementia in the UK.  Although the risk of developing dementia increases with age, it is not just a disease of the elderly.  There are currently around 40,000 people with dementia in the UK under the age of 65.

The vast majority of cases of dementia cannot be cured. However, there is a lot that can be done to enable someone with dementia to live well with the condition. Many people with dementia can continue lead active, healthy lives for years after diagnosis.  Even most elderly people with mild to moderate dementia can continue to live in their own homes.

The importance of good urban design

Evidence has shown that well-planned, enabling environments can have a substantial impact on the quality of life of someone living with dementia and their ability to retain their independence for longer.

For example, being within easy walking distance of shops and other local amenities can help people with dementia to remain physically active and encourages social interaction.

Having access to green space and nature also has particular benefits, including better mood, memory and communication and improved concentration.

Key characteristics of a dementia-friendly environment

Drawing on the principles set out in ‘Neighbourhoods for Life’, the RTPI advises that urban environments should be:

  • Familiar – functions of places and buildings made obvious, any changes are small scale and incremental;
  • Legible – a hierarchy of street types, which are short and fairly narrow. Clear signage;
  • Distinctive – including a variety of landmarks and a variety of practical features, e.g. trees and street furniture;
  • Accessible – access to amenities such as shops, doctor’s, post offices and banks within easy, safe and comfortable walking distances (5-10 minutes). Obvious, easy to use entrances that conform to disabled access regulations;
  • Comfortable – open space is well defined with public toilets, seating, shelter and good lighting. Background and traffic noise minimised through planting and fencing. Minimal street clutter;
  • Safe – wide, flat and non-slip footpaths, avoid creating dark shadows or bright glare.

Dementia-friendly communities

In addition to specific guidance on how to improve the urban environment, the RTPI practice note also highlights the crucial role of planners in the creation of ‘Dementia Friendly Communities’.

This is a recognition process, which publicly acknowledges communities for their work towards becoming dementia friendly.  It aims to involve the entire community, from local authorities and health boards to local shops, in the creation of communities that support the needs of people with dementia.

There are 10 key areas of focus.  Those particularly relevant to planning include:

  • shaping communities around the needs and aspirations of people with dementia;
  • the provision of accessible community activities;
  • supporting people to live in their own home for longer;
  • the provision of consistent and reliable transport options; and
  • ensuring the physical environment is accessible and easy to navigate.

There are currently over 200 communities across the UK working towards recognition as dementia-friendly.  Dementia Friendly East Lothian and the Dementia Friendly Kirriemuir Project are two such examples.

Local government policy

By 2025, it is estimated that the number of people diagnosed with dementia will rise to over one million.  Significant under diagnosis means that the number of people who experience dementia may be even higher.

However, the RTPI report that at present few local authorities have made explicit reference to dementia in their adopted local plans.

Worcestershire County Council and Plymouth City Council are notable exceptions:

  • Plymouth have set out their ambition to become a ‘dementia friendly city’ in its current local plan; and
  • Worcestershire are currently developing a draft Planning for Health Supplementary Planning Document that covers age-friendly environments and dementia.

A beneficial environment for all

While these are important first steps towards the greater recognition of the role of planning in supporting people with dementia, it is imperative that planning explicitly for dementia becomes the rule, rather than the exception.

Not only will this benefit people with dementia and reduce healthcare costs, it may also benefit the wider community, including young families, people with disabilities, and older people.

As the RTPI rightly state, “environments that are easy for people to access, understand, use and enjoy are beneficial to everyone, not just older people with dementia.”


“All it takes is one song to bring back 1,000 memories”: using music therapy in dementia care

unsplash-ipod-music

Earlier this month, it was reported that dementia had overtaken heart disease as the leading cause of death in England and Wales. And caring for those with dementia is becoming the major social care challenge of the 21st century – over 1 million people in the UK are expected to have dementia by 2021.

Despite significant research into the condition, there are no long-term cures. As a result, health and social care teams, and researchers into the health and well being of older people, have started to promote non-pharmacological ways of alleviating symptoms and reducing distress to the patient and their family.

Many of these techniques are widely accessible, require little to no formal care training and can take place either in the patient’s own home or in a care home setting. One of these techniques is the use of music as a form of therapy. While specially trained dementia and Alzheimer’s music therapists exist to give formal therapy, carers and family members can also use music to help improve the quality of life of a person suffering from dementia or Alzheimer’s.

Benefits of music therpay in dementia care

Research and experiences from practice regularly show similar outcomes when using music with dementia care patients. The benefits that are consistently highlighted include:

  • Music evokes emotion and this in turn can evoke memories which can help sufferers and family members to connect together.
  • Musical aptitude and appreciation are two of the last remaining abilities in dementia patients – it is one of the first cognitive skills we develop as new-born children and is one of the last things to leave us in degenerative cognitive diseases.
  • Music can bring an emotional and physical closeness the association that a patient makes with a song can encourage them to complete actions such as dancing or hugging which they associate with that piece of music. It can also enhance feelings of security and safety among vulnerable patients.
  • Singing can be used as a way to engage and to encourage people to express feelings, even if it does not include words or sentences. It can be a way to encourage participation and socialisation, as well as stimulating brain activity, dexterity and physical activity if actions are also introduced to go along with the words.
  • Music has been proven to stimulate the release of hormones which gives it the ability to shift mood and manage stress.

“Come fly with me … Let’s make a cup of tea”

One project from Purple Angel music has rewritten and altered the lyrics to some well-known songs which are loaded onto an iPod and can be placed in a person’s home to remind them to carry out day-to-day tasks such as eating and drinking, locking their front door, turning off their fire and showering.

The pre-loaded iPod, which comes in a number of musical genres, contains two 12-hour tracks  one which plays the lyrically-amended songs at two hour intervals throughout the day to act as a reminder service, and the other which is 12 hours of silence, designed to allow the patient to sleep without having to remember to turn off the iPod.

Examples of the altered tracks include:

  • L.O.V.E,  I’d love a cup of tea a song to encourage rehydration via a cup of tea
  • That’s Amore, That’s a bath day a song to encourage taking a shower or bath
  • Let There be Love, Let there be lunch a song to encourage eating
  • Can’t take my eyes off of you – a song to encourage night time requirements, like locking the door and turning off the fire.

A playlist for life

In August 2016, the Care Inspectorate backed a scheme called ‘playlist for life’ which encourages care homes to integrate music into their care for patients with dementia. Moving beyond just allocating a time to place headphones onto a patient and leaving them to listen alone (although at times this may be helpful too), the aim is for music to be a vehicle for connected care. It allows carers to use music as a tool to find out more about the person they are caring for and encourage them to engage through the music.

“Music can reveal previously hidden aspects of the patients to their carers; likes and dislikes, talents and memories – it all helps piece together the jigsaw of an identity obscured by illness.”

As the video above shows, using music can also be a way for family members to re-engage with the person suffering from dementia. It also  allows them to feel like they are directly involved in a positive element of care, as they are often invited to create the playlist, using songs that they know will evoke specific memories or emotions for the patient, and then listen along with them, interacting as they do so.

Similarly, Music for Life, a project run jointly by London’s Wigmore Hall and the charity Dementia UK brings specially trained musicians into care homes to work with patients, carers and family members in group and 1-2-1 sessions, creating and listening to music. Musicians, care home staff and managers meet after each session to reflect on what they have learned about the patients – knowledge that helps in future care and treatment.

Music as a communication tool

Formal research has supported the use of forms of music therapy, whether they be formally delivered by trained specialists or integrated into day to day caring by family or social carers. As mentioned above, research has demonstrated the positive effect it can have, both on the patient but also on their family.

Over 800,000 people currently live with the condition and roughly 25 million people  nearly half the UK population  are affected by it through knowing someone with the condition.

Music offers a way to care for people suffering from dementia in a sensitive, person-centred and cost effective manner. It can also be a vital tool to support families who can reconnect with their loved ones through a piece of music, even when other forms of communication have become difficult.


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Assistive digital technology and older people: technology “bricolage” in dementia care

A key focus of social care teams today is helping people to grow old at home, safely, with dignity and with appropriate levels of care if needed, without breaking the budget. Increasingly, local authorities are looking to advances in technology to facilitate this “growing old in place”.

Telecare packages and assistive technologies are often the preferred way for care teams to deliver social care in a home setting. And in situations where care is required around the clock (for example, support for people with dementia and other life limiting degenerative diseases), families and carers are adapting everyday technology and integrating it into their care-giving in order to supplement the telecare provided by local authorities.

Notruf und Hilfe für Rentner und Kranke

 

Bricolage in dementia and elderly care

Bricolage means adapting an object to allow it to carry out a function which was not necessarily its original intended function. Relatives who care for loved ones with dementia, often adapt everyday objects to help them with their day-to-day caring. They find new, innovative and often non-conventional ways to use technology in diverse ways.

dementia post it

One example from dementia care was a man who bought a chicken ornament with a sensor which “crowed” whenever anyone walked past it. He placed it beside the front door so that if his wife, who suffered from dementia, walked up to the door to go out, he would hear and be able to go to her.

Other examples of technology being adapted include: setting alarms and reminders on mobile devices to remind people to take medication, or using webcams to act as personal CCTV so familly carers can monitor loved ones when they go out, or go into the next room.

These examples show that objects don’t have to be digital in order to be effective. The rise in capability of digital technologies and the relative decrease in cost, however, means it is often quicker and easier for families to invest in additional technologies themselves, rather than waiting for an assessment and an allocation of additional technology from their council.

Image by Buddi

Image by Buddi

Ethical challenges

Although there may be practical motivations, some charities have expressed concern about the ethics of some of the practices regarding adaptation of digital technology to form part of an assistive care package. While they recognise the strain of caring is significant for many people, rigging up a webcam in each room to allow you to “monitor” a loved one, or attaching a GPS tracking bracelet, for example, while often done with the best of intentions, could be interpreted as a breach of human rights.

Active assistive technology (technology which requires an active call for assistance) rather than passive technology (which is constantly monitoring) may be a better way of using technology ethically. It may also be used as an additional stimulant or interactive tool to allow patients to communicate. Apps and interactive devices, such as tablet computers, can inform a carer or loved one that someone had been using the app (providing a type of reassurance and monitoring) and the activities the app promotes might also be a visual stimulant and a communicative tool. The Dementia Citizens project has adopted this method and aims to help people with dementia and those who care for them, using apps on smartphones and tablets.

Dementia Citizens from Nesta UK on Vimeo.

Final thoughts

If we are mindful of the ethical challenges of integrating more technology into care, it might be possible for families and carers to work with social care and assistive technology development teams to adapt the tools available in a more empowering way. It might also mean that the onus is not on carers and their loved ones to build what they can from the standardised telecare provided by local authorities.

Bricolage in assistive care has, for many families, become the norm without them realising it. By adapting and supplementing assistive technology, like telecare packages, with non-assistive technologies or adapted additional digital technologies, families and carers can create a bespoke and personalised care package.

In future, understanding the extent to which families and carers adapt the technology given to them, could help creat more flexible care packages which can be more easily adapted to suit individual needs.

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