DLF’s submission to the APPG on adaptations and dementia.

Inquiry into Housing for those with Dementia evidence into the role of adaptations.

Written evidence submitted by the DLF, part of The Shaw Trust, into housing for those with dementia.

Executive Summary

1. The DLF is a major provider of impartial information, advice and training on equipment for independent living, the scope of our work includes advice about adaptations – the focus of this enquiry - as well as broader assistive technology. Our current area of strategic focus is the ageing population and we have a range of service developments under way currently including development of our self-assessment platform AskSARA to include new additional topics that support people living with dementia. The primary benefactors of our work are older and disabled people and their carers which includes people with dementia. We are submitting this paper in order to share insights with the APPG from running these services and contribute to thinking in this area.

2. We would like to draw the Group’s attention to the importance of the role of unpaid carers and friends and family looking on behalf of older and disabled people and their willingness to self-manage and self-fund. We also want to share the general concern we have that people searching for information are mainly still doing it from the point of view of a crisis or event-driven search, the DLF feels that a public awareness campaign is needed in order to raise awareness of the benefits of assistive technology for all of us.

3. Our opinion from our vantage point sitting at the interface between those searching for advice and the manufacturers and suppliers of the AT equipment is that there are thousands of good products – aids and adaptations - with well-established channels to market that have the scope to meet any increased demand. There are also good sources of advice such as our own Living Made Easy marketplace that could be informing more people and enabling greater independence if general awareness of assistive technology and what it can do was higher.

4. We also want to draw the Group’s attention to the importance of the role of trusted assessors who are able to recognise risk and recommend assistive technology solutions to increase independence on the front line especially when funded services are not alerted to their need. This forms part of the solution to speeding up access to assistive technology solutions.

5. Impartial comprehensive advice tools that represent the market well and expansion of the role of trusted assessors are both programmes that can contribute to broader and faster adoption of assistive technology thereby enabling both greater independence and the chance to maintain chosen lifestyles as people age.

A brief introduction to the DLF

1.0 The DLF is a 50 year old UK charity (part of The Shaw Trust since 2014) whose mission is to provide impartial information, advice and training about equipment for independent living (assistive technology) to older and disabled people and their carers and the professionals that support them. In 2019 we provided advice to around 1.5 million people across our portfolio of free and impartial services. Typically around a half to two-thirds of people searching are looking on behalf of others and in 2020 we have established a working partnership with Carers UK to underpin our work in supporting unpaid carers with this advice, we launched a joint version of AskSARA https://carersuk.livingmadeeasy.org.uk in Carers Week 2020.

2.0 DLF’s published advice is authored by occupational therapists, is impartial and includes over 90 topics within AskSARA, over 200 articles in Living Made Easy and over 40 Factsheets / guides to choosing https://www.dlf.org.uk/content/full-list-factsheets/ including 12 dealing with dementia-related solutions. We are currently mid-way through a programme to develop new advice designed to address functional needs that typically arise due to dementia which will result in us adding new topics and modifying existing advice. In June 2020 we took over full responsibility for the AT Guide, previously a joint venture between Trent DSDC and the DLF, this involved adding a number of dementia-related products to our central database.

3.0 The DLF’s central database supports our information and advice portals Living Made Easy https://www.livingmadeeasy.org.uk (1.1 million visitors in 2019), AskSARA https://asksara.livingmadeeasy.org.uk (3,000 tailored reports generated by users every month) and our Helpline along with our ‘DLF for Professionals’ prescribing tool. The database currently holds details of over 10,000 products from over 950 national suppliers, we also hold details of over 850 local retailers. This is the most comprehensive database of its type in Europe. The DLF also hosts and moderates the Youreable forums that in 2019 reached over 900,000 users.

4.0 The DLF is the UK member of Eastin http://www.eastin.eu/en/searches/Products/Index the global body for providers of information about AT. We have a dedicated team of full-time staff that manage this AT database. Our goal for the Living Made Easy website is that it aims to represent the market as it stands with as many products and their suppliers as possible – visitors can search for suitable products and click-through to purchase many of the products from those suppliers.

5.0 Our work to support professionals continues to evolve under our ‘DLF for Professionals’ programme that supports professionals involved in assessing for equipment, we are leading advocates of the Trusted Assessor model that trains and accredits a range of job roles to increase the availability and speed of assessments. We trained and accredited 900 + learners in 2019.

6.0 The Trusted Assessor role is key to reducing hospital admissions; prevent bed blocking and increasing independence for vulnerable people. The DLF has worked closely with relevant stakeholders to refresh their range of services to give employees working within the health, social care and housing sectors the confidence and support to deliver adaptations and assistive technology to those who need it, in a timely manner. In collaboration with Foundations, DLF developed the Trusted Assessor: Assessing and Adapting the Home training to enable housing associations and others to reduce waiting times for Disabled Facilities Grant funding and enabling major adaptation works to start swiftly, reducing risks to service users. Our leading training content has also contributed to best practice documents such as the Royal College of Occupational Therapy’s ‘Adaptations without Delay’ report (2019). The DLF also works with professionals to increase their confidence and keep up to date with current assistive technologies and best practice, rolling out their level five adaptations training to solidify and standardise practice across all areas of equipment and adaptation provision.

7.0 It is the DLF’s aim to reach 5 million people by 2022, with our impartial advice, information and training on equipment for daily living. The DLF believes that while the transition to new lifelong homes takes place, existing housing for people with dementia can be adapted and equipment installed to support independence for longer. Early trusted information and advice about assistive technology products is crucial. Through closer working with organisations such as Carers UK and Alzheimer’s Society we can work towards the five million goal.
 
Why we are submitting evidence

1.0 We are sharing recent statistics and insights from running our information and advice services as a contribution to the enquiry. Trusted information and advice can help people with a functional need to prepare and plan to manage their needs independently. It also supports carers in being more informed and helps them to better care for their loved ones with dementia.

To increase provision of assistive technology, more assessors are required to highlight and recommend equipment or adaptations safely. Historically a role for occupational therapy, assessment of need at a non-complex level can be conducted by any suitably trained person. Working with front line services such as charitable organisations, public sector, emergency services and commercial teams, the model can be used to support the development of Trusted Assessors to meet the ever increasing need.

2.0 Disabled and older people and people with lived experience of disability are a hugely untapped resource of first-hand information and knowledge of the benefits and pitfalls of AT devices. Disabled and older people with AT experience could support individuals and families to identify an appropriate solution for their access needs using self-assessment tools such as AskSARA to guide their conversations; they can also share their first-hand experiences of solutions in forums such as the Youreable forum that the DLF hosts and moderates https://www.youreable.com/. Older and disabled people can work as Trusted Assessors and this role can often be successfully combined with other roles to do with community engagement.

The evidence

1.0 The UK needs to better support the role of unpaid carers. Profiling users of our UK-wide impartial advice services shows that there is active engagement by the public interested and willing to self-purchase, also note the intergenerational nature of the search activity.

2.0 Living Made Easy is the DLF’s busiest advice platform with over 1 million users in 2019. Online surveys of users conducted in early 2020 show that 49% of users of Living Made Easy are looking on behalf of someone else, 76% are intending to purchase a product now or in the near future and 85% of those are expecting to privately fund that purchase. The chart below shows who they are searching on behalf of by relationship. Equivalent figures for users of AskSARA the online self-assessment tool show that 64% of users are looking on behalf of someone else, 46% looking on behalf of a parent, 25% spouse and 11% a child. 60% of users of AskSARA expect to purchase a product and 71% of those expect to fund it privately.

3.0 Service providers find that analysis of the topics accessed by users of AskSARA provides valuable insights as they represent ‘unfettered demand’ before any enquiry handling activity has impacted on the choice of solutions. Analysis of users of AskSARA over a 3 year period provides the following insights in terms of the topics interrogated. Topics have been grouped to show trends more clearly, these are the top 20 areas; further data can be provided. It is striking to see the sheer breadth of usage across topics. From a choice of over 90 topics we see widespread use across them such that for example the top 5 grouped areas (each made up of several topics totalling in fact 44 separate topics) themselves represent only 35% of usage.
Significantly, the most popular topics deal with the essentials of daily living, underlining the importance of AT solutions being easily and quickly available to fulfil those needs before they escalate due to accident or neglect.

Topics that users of AskSARA have run reports on (Source: DLF)

4.0 The ability to carry out a self-assessment that identifies equipment solutions can be a component of maintaining independence and feelings of control when faced with a dementia diagnosis and progressive cognitive impairment. Equipment may only be part of the answer to someone’s care needs alongside therapies and support groups to retain connections, cognition and social interaction but people’s independence and quality of life can be enhanced by access to good reliable information and advice such as the information provided in AskSARA and our 12 dementia-specific Factsheets.

5.0 The DLF also has recent evidence that there is growing awareness of technology enabled care / telecare solutions, the profile of calls handled in 2019 by the DLF Helpline (10,000+ calls) shows that the first-ranked topic is telecare / technology enabled care although callers are typically asking about first-generation locator devices rather than whole-home systems. The table below shows the breakdown of calls handled by topic area in 2019.

DLF Conclusion.

1.0 The DLF believes there is a need for a public awareness campaign to raise the profile of assistive technology available on the market that can support people living with dementia. Such a campaign would harnesses the clear willingness of families to engage and often self-fund.

2.0 The DLF understands that current awareness issues mean that good information provision on suitable assistive technology is not always easily visible to the public: ‘I wish I’d known sooner’.

3.0 Information about the right aids and equipment can also reduce the physical and mental challenges faced by unpaid carers. Being able to get the right equipment at the right time free or at an affordable price, may also help enable many people to view themselves increasingly in terms of their abilities, not in terms of their ‘condition’ or ‘disability’. Use of adaptive equipment in caring for persons with dementia at home is an underutilized compensatory strategy that can also help ease aspects of caregiving and support the safety and functionality of persons with dementia.

4.0 Training for professionals via the Trusted Assessor framework can support a wide range of roles to be confident in prescribing and fitting equipment in people’s homes, helping older and disabled people to remain independent for longer and supporting housing, health and social care delivery in a time of increasing need and decreasing budgets.

5.0 The DLF believes that impartial advice and information about AT products provides a valuable resource for the public who are often willing to self-manage and self-fund those purchases. Increasing the adoption of the role of trusted assessors can transform the ability of service providers to quickly identify and source suitable AT solutions for people receiving assessments. This ‘whole system’ approach can contribute some of the answers to the future housing and care challenges that lie ahead in the field of dementia.

June 29th 2020

Email enquiries@dlf.org.uk

Tel 0300 123 3084

The DLF is part of The Shaw Trust a charity with company number 1744121 registered in England and Wales 287785 and Scotland SCO39856.