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).

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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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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.”


World Alzheimer’s Day: can we reduce dementia risk?

Older woman with Alzheimer's in a chair

Image courtesy of Flickr user Vince Alongi using a Creative Commons license

By Steven McGinty

On the 21st September, Alzheimer’s organisations across the world will be carrying out events to raise awareness about Alzheimer’s and dementia. The event, a key part of World Alzheimer’s Month, was launched by Alzheimer’s Disease International (ADI) in 1994, with the aim of highlighting the tremendous work carried out by Alzheimer’s organisations.

Each year, a new theme is selected for World Alzheimer’s Month, and this year the focus will be on how we can reduce the risks of developing Alzheimer’s and dementia. In support of this event, I’ve decided to look at some of the statistics on dementia, as well as review the latest evidence on reducing the risks.

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