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P16: Living in the community

Detailed programme, abstracts and presentations

P16: Living in the community

P16.1. Dementia friendly communities across Europe – findings from a mapping survey

WILLIAMSON Toby, HARE Philly

“Dementia-friendly communities” are a concept that has gained widespread recognition and activity across many European countries. Policies, projects, and initiatives aimed at making municipalities, cities, towns and villages more dementia aware, supportive, and inclusive of people with dementia have grown considerably in number over the last few years.

This presentation will report the findings from a Europe-wide mapping survey of dementia-friendly communities undertaken by the UK’s Mental Health Foundation in 2014, and funded by the European Foundations’ Initiative on Dementia (EFID) which includes the Joseph Rowntree Foundation. The survey gathered information from a wide range of organisations working in this field, about their work, both conceptual and practical factors that were considered to be important in the development of dementia friendly communities, and examples of notable practice.

There were 194 respondents to the survey covering 19 different countries. A number of common factors and themes emerged from the survey as well as some differences between countries. The presentation will present the findings from the survey together with some examples of notable practice and will be of great interest to anyone involved in the development of dementia friendly communities in Europe.

P16.2. Creating a dementia friendly workplace – a practical guide for employers

 McNAMARA George

As the workforce ages and the number of people retiring at a later age increases, the number of people living with dementia while they are in work is set to rise. This has implications for employers, who are beginning to recognise that dementia is becoming an increasingly big issue for their organisation and their staff.

A dementia diagnosis doesn’t necessarily mean a person can no longer do their job. However, dementia is a progressive condition and over time it will increasingly impair a person’s ability to work. As this happens, they may need support to help them remain at work. Eventually, they may need information from their employer about leaving work. This might include discussing retirement options and access to financial advice.

Similarly, support will be needed for those who decide they no longer want to work following a diagnosis of dementia. Finally, some employers will specifically wish to recruit and employ people who have the lived experience of dementia, for example as peer support workers.

This practical guide is for all UK employers – across all sectors and of all sizes – to help them provide this type of support for the people with dementia and carers they employ

It includes information about dementia, its symptoms and common issues faced by people with dementia

  • information about your legal responsibilities in relation to the protection of people with dementia from discrimination
  • ideas to help you develop awareness of dementia in your workplace
  • step-by-step tips to help you support a member of staff who is affected by dementia at different stages of their dementia journey, covering a number of common workplace scenarios
  • information and guidance on making reasonable adjustments to ensure people with dementia are not disadvantaged in the workplace
  • a list of organisations that can give further advice and support to you as a manager and to employees who either have dementia or care for someone with the illness.

P16.3. The impact of living with missing incidents: How the experience and fear of missing incidents affects people with dementia and those who care for them

HOLMES Lucy, SHALEV-GREENE Karen, CLARKE Charlotte, PAKES Francis.

When someone with dementia goes missing, whether they have become disorientated on a regular route, left home without telling anybody, or set out without a planned destination, the impact on them and the people who care for them can be significant and long lasting.

Based on in-depth interviews with family carers, this exploratory study has aimed to explore the impact of ‘missing’, and the fear of missing incidents, on people caring for someone with dementia living in the community. Using a conceptual framework incorporating the notions of ‘freedom’ and ‘total institutions’, the study examines the ways in which risk-mitigating behaviours have an impact on the freedom of carers and people living with dementia.

UK police forces responded to 306,000 missing person reports in 2012-13; around five per cent concerned people aged over 60 years. When someone with dementia is reported missing, it is likely that they will receive a higher risk assessment level than many other missing people. Biehal et al (2003) state that those with dementia who go missing are usually found within a few days but the impact on the police is nonetheless significant; estimates of the cost of a single missing person incident range between £600 and £2,500, depending on the risk level and duration of the incident (Shalev-Greene and Pakes 2013).

This paper will describe the study’s findings about a range of subjects, including carers’ knowledge about missing; the impact of coping strategies carers employ to prevent or minimize missing incidents; carers’ fears and how these are balanced against known and unknown risks; carers’ search behaviours; and the long-term effects of living with dementia and missing incidents.

This research has wide-ranging implications for future research, for police procedures and training, for practitioner (including clinician) knowledge and behaviour, and for families living with dementia.

P16.4. Living in the community: travelling with dementia

MCADAM Nancy, Scottish Dementia Working Group

Background: The Scottish Dementia Working Group (SDWG) is a national campaigning group, run by people with dementia and is the independent voice of people with dementia within Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.

Aims: The group identified travel, particularly when using public transport, as an issue that people with dementia can find challenging. 

They wanted to find safe ways to travel and be able to share these with others across Scotland and to raise awareness of their issues amongst transport staff. 

This presentation describes the process of how the group members set out to resolve these issues.

Method/Participants: In 2013, six members of the group came together to form a “Transport Sub-group.” The group meets 6 times a year, and these meetings have been held at different venues and involved members trying out various modes of travel to help fully understand the challenges faced.

They decided that the best way of tackling these issues was by producing a booklet entitled ‘Travelling with Dementia’.

The group has worked with major transport agencies and has provided training and advice for agency staff to raise awareness about the issues surrounding travelling well with dementia.

Findings/Desired Outcomes/Conclusions: The “Travelling Well with Dementia” (2014) publication includes useful hints and tips for travelling  It includes practical measures to make the journey safer and minimise stress, and sign-posts readers to services and organisations that can provide further assistance and/or resources.

Providing support and advice for people with dementia, and increasing awareness within the transport sector, and within the general public, has empowered many people with dementia to get out and about as independently as possible thus increasing self-esteem and confidence and strengthening their own personal capacity and resilience.

P16.5. Fire risks and safety strategies in the homes of people affected by dementia.

HEWARD Michelle, KELLY Fiona

Impairment, disability and dementia are substantial factors in increasing the risk of injury or death from fire in the home. Given the predicted rise in the numbers of people affected by dementia internationally, it can be assumed that the risk of fires in the homes of people with dementia will also increase unless dementia-specific fire prevention guidance is developed. The aim of the Fire Safety Innovations for People Affected by Dementia project is threefold: 1) to develop guidance that can be used internationally to help people affected by memory problems or dementia to be safer in their homes, 2) enhance the quality of life of people affected by dementia by enabling people to live independently in their own homes for longer, 3) to create a training package that will ensure Fire and Rescue staff and volunteers, and other practitioners who visit people in their own homes, are better equipped to work with people affected by dementia to ensure they are as safe as possible from fire risk. This paper reports on the findings of focus groups that explored fire risks and safety strategies in the homes of people affected by memory problems and dementia. Focus groups were conducted with people with dementia and carers, Fire and Rescue Service staff and volunteers, and other practitioners who visit people in their own homes. This project is the first in the UK to develop a critical understanding of fire risk and prevention strategies in the homes of people with dementia and to create a much needed approach to reducing fire incidents, injuries and deaths.

 

 
 

Last Updated: Monday 28 September 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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