Preparing for the housing needs of people with dementia

A recent survey found that smaller housing associations are, in general, not well prepared when it comes to supporting older people with dementia. But what can be done to address this? David Hucker, chairman of the Orbit Charitable Trust, reports.

There is no doubt that dementia is a ticking time bomb. When Prime Minister David Cameron launched the Dementia Challenge in May 2012, he described the level of diagnosis – only 44% in England, Wales and Northern Ireland ever receive a formal diagnosis – as a “scandal”.

He also talked about the “shockingly low” levels of understanding and awareness of the condition and set down a challenge to make England among the best in the world for research and support.

The statistics are well known: about 800,000 people currently live with dementia in the UK, and two-thirds of whom are cared for in the community,
according to the Alzheimer’s Society. But the number of people with the condition is estimated to double within the next 30 years.

Dementia already costs society £23 billion a year – more than cancer, heart disease or stroke – and the projected increase in diagnoses means that figure will also rise hugely in years to come.

Equally worrying is the fact there have been no significant advances in treatments since 2003. But the Prime Minister announced plans to hold the first global dementia summit in December [2013], as part of the UK’s presidency of the G8 group of leaders, where members will be challenged to work together to tackle the condition. While this move is heartening, we cannot wait any longer to help those who have dementia now.

On a local level, it is imperative that we act now to help those with the condition and support them in their needs and provide help to their families and carers as well. Housing providers are central to this and it is incumbent on social housing organisations and housing associations to be prepared to support people with dementia and their carers.

But a recent survey by the Orbit Charitable Trust found that many smaller housing associations do not have the right strategies in place as yet to cope with meeting the demands of residents with the specialised needs that dementia brings. That so few housing groups have taken steps to prepare for the future impact of people with dementia demonstrates that much work has still to be done. The statistics Orbit found were worrying, but present the opportunity to turn the problem around and begin to do something positive.

The survey Orbit carried out the Small Housing Associations Research in June and July to ascertain which of the smaller and specialist housing providers in the country had dementia and older people strategies in place. In all, 294 organisations were contacted and 88 (30%) responded. Of those:
■ 60% classed themselves as general needs housing associations
■ 32% said they were specialist housing associations
■ The remaining 8% described themselves as “other”, which included sheltered housing, over-60s independent living and general needs plus
support.

The questionnaire asked the organisations about current practice and future plans, how they engage with older people, and the partners with whom they work. The headline figures were surprising:
■ Only 8% (seven) said they had a dementia strategy in place
■ 63% (55) said they did not have a dementia strategy drawn up.

Of those 55, 24% (13) said they did not need one. The same number said a strategy was being developed, while 12 said they had not yet thought about it. In addition, significant numbers of housing associations do not have an older people’s strategy. Thirty-nine organisations answered the question: ‘Do you have an older people’s strategy in place?’:
■ 48% said they do not have an older people’s strategy in place
■ 28% do have an older people’s strategy in place.
Only 10 said there were plans in place to develop an older people’s strategy, while 23 said that no older people’s strategy would be drawn up. The final six did not know if there were plans to develop a strategy.

Strategic importance
But is it important for housing providers that house older people to have two distinct strategies in place? Simply: yes. An older people’s strategy is about developing and tailoring services to meet their needs, looking at how organisations engage with them and establishing how the tenants and residents can be involved with shaping those services.

But a dementia strategy is far more specific and addresses the needs of those living with the condition. It is geared towards improving their quality of life and that of their families and carers; working in partnership with health professionals and other experts so that staff are adequately trained when dealing with residents with dementia. It also looks at what adaptations are required and what support residents could get so that they can maintain their independence for longer.

The differences between the two are clear. And it is equally clear that housing providers – no matter what their size – have to have a policy in place and be prepared to tackle this particular challenge. So what have the findings of this survey demonstrated? They have revealed that awareness has to be raised so that smaller housing providers can fill the gap in their provision and tackle head-on the challenges that dementia brings.

Creating dementia friendly organisations
There is no single ‘best practice’ dementia strategy nor is there a one-size-fits-all older people’s strategy. Instead, smaller housing providers should look to work in partnership with medical professionals, specialist agencies and charities such as Age UK and the Alzheimer’s Society to develop policies that are pertinent to their tenants.  By linking to specific services, it is easier to look at what provision is already in place and decide what solutions can be provided to plug any holes. Looking at it from the organisation’s point of view, is it simply a case of developing a strategy that supports the effective day-to-day management of staff who come into contact with residents with dementia?
Probably not. Dementia strategies should be wider than aiming to be more inclusive; it is about reflecting the ethos of the organisation.

Each organisation will have different priorities but, fundamentally, suitable training for all staff is essential because they need to understand how different types of dementia affect people. Staff must be equipped with the appropriate knowledge and responses when in contact with residents with the condition and their families. As training can be expensive, a peer mentoring project could be the answer.

The strategy should also look at how people with dementia and their carers can access adaptations for their home quickly and easily. Is there sufficient signposting for information and support? Will the policy enable those with dementia to remain in their home for longer? Future-proofing people, allowing them to maximise their abilities to live an independent life, rather than focus on the disability that dementia can bring in later stages, is key. Smaller housing organisations have an important role to play here. They can not only be enablers but also act as drivers of change and innovation because they are nimble enough to respond flexibly to their residents’ needs.

Orbit’s next step is to tailor some further work around the smaller housing associations that do not have the resources, expertise or money to develop a dementia and an older people strategy. Examples of good practice are needed and Orbit will look at where it can fill the gaps. The survey asked the organisations if they would work with us and nine have volunteered to learn more so that they can implement their own strategies. The idea now is to get those providers together and work with them to develop models that can be used by other small housing organisations when they look to create their own policies. We are keen to see how their services can be developed for the benefit of their residents and tenants.

Conclusion
Barriers of misunderstanding and fear about dementia have to be broken down by society. We have made many advances in the understanding of dementia in recent years and the government supported Dementia Challenge has provided additional motivation for organisations, agencies and communities to play their part. The Orbit survey has given small housing providers further impetus to stand at the forefront of innovation and change. By working with health professionals and expert charities, housing groups can develop innovative and creative policies that are specifically geared towards helping people with dementia.

Such strategic partnerships will allow providers to create and build new services that will undoubtedly result in new and different ways of delivering and designing better services. As our population gets older, we cannot wait any longer. Growing numbers of people are being diagnosed with some form of dementia every year and they, and their families and carers, need all the support they can get to ensure they can enjoy living life for as long as possible.