"Everyone is enthusiastic about the content. But sometimes that’s not enough."

Prof. Dr Marjolein de Vugt (Director of Alzheimer Centrum Limburg) was one of the founders of ‘Partner in Balans’, an intervention designed to help the loved ones of people with early-stage dementia. Although the programme has been a success in terms of its content, its implementation did not go as planned. Why was that, and what turned the tide?

Let’s go back in time: the idea for Partner in Balans first emerged in 2011. De Vugt: “Every day at the memory clinic, we saw how carers of people with early-stage dementia were struggling with their new situation. We realised we had very little to offer these informal carers.’ This prompted De Vugt, who is also a health psychologist and professor of Psychosocial Innovations in Dementia, to work with a team to devise a support programme.

“We wanted something we could offer online: personalised guidance – ideally interactive – that you could work through at home at your own pace, along with contact with a healthcare professional acting as a coach. The programme also needed to take a positive approach: what is still possible?”

Staying active for longer, enjoying life more

In collaboration with informal carers and healthcare professionals, the team is developing the initial content and structure of ‘Partner in Balance’. The aim is to support the loved ones of people with early-stage dementia in coping with the changes, so that they can continue to provide care for longer and (continue to) enjoy life more. Hence the central theme: ‘a healthy balance in daily life’.

Medical Inspirator Award

Development is progressing so well that the team received the 2017 Medical Inspirator Award for their work. This is an incentive award for collaborative projects between researchers and patients (or other end-users, such as informal carers). The programme was subsequently expanded to include various resources for informal carers of people with Parkinson’s disease and Huntington’s disease. Further recognition followed, this time from Vilans: Partner in Balans was included in the database of recognised interventions (databankinterventies.nl).

So ‘Partner in Balans’ is a success. “Everyone is indeed enthusiastic about the content,” says De Vugt. “But that’s not always enough to ensure an intervention resonates with the target groups.”

Recouping costs proves difficult

During implementation, the team is running into barriers. To keep the programme running, costs have to be covered. De Vugt: “Think of licences you need to purchase, or training the coach who will provide support.” These costs need to be recouped somehow. And that’s where the problem lies. “Support for informal carers isn’t covered by health insurance. That’s why we want to offer it through healthcare organisations. But they must be willing to purchase the licences for the informal carers.” That’s proving difficult.

Healthcare organisations are reluctant

“You have to invest up front; that’s where the costs lie. They are incurred in the early stages of the illness,” explains De Vugt. “But the benefits come later: delayed hospital admissions, and informal carers who can manage at home for longer.” Because this isn’t immediately apparent, many care organisations are reluctant.

Complex funding system

The funding silos within our healthcare system also make stakeholders less keen to pay. After all, what if costs do not all fall under the same funding system? For example, some might fall under the Long-Term Care Act and others under the Social Support Act. This makes it complex.

Following numerous discussions with various stakeholders regarding grants and project funding, we have finally succeeded in implementing ‘Partner in Balans’ at a number of care organisations. However, there is still no solution in place to sustain the programme in the long term. These are temporary funds that are running out. De Vugt: “We would like to see that change. Structural funding is needed.”

Lessons learnt and tips for colleagues

De Vugt and her team have had to travel a long road: “With the knowledge we have now, we would have approached it differently back then.” What would they have done differently?

“Look well ahead”

“With a larger project like this, it’s worth drawing up a business plan. This forces you to think about the development path, implementation and funding at an early stage.” In hindsight, De Vugt and her team did this too late. “When looking ahead, it’s also important to consider what the key ingredients for success are in your intervention. And to monitor them closely.”

Another aspect worth considering for the long term: ensure you can invest in engaging and training healthcare professionals. “Because you may well have a good intervention, but how else is it going to become part of their daily routine?”

“Involve the right expertise”

De Vugt: “Involve parties with the right expertise as early as possible; that way, you can make more informed decisions. In the beginning, we developed methodologies about which we didn’t have enough knowledge. For example, at the time we knew too little about e-health.”

“Adapt where necessary”

“We designed our trial very carefully from a methodological point of view,” says De Vugt. “But implementation research takes place in everyday practice. In hindsight, we should have taken greater account of what works in practice, for example by involving healthcare professionals who already had extensive experience as coaches. The lesson is that you sometimes have to strike a balance between methodological rigour and what is needed in practice to ensure an intervention is successful.”

No exception

Successful content is therefore no guarantee of effective implementation. And ‘Partner in Balans’ is not the only project to have encountered this problem, as Prof. Robbert Huijsman, Professor of Innovation & Implementation in Dementia Care (Erasmus School of Health Policy & Management), is well aware. “Time pressure and failing to think through the entire process properly in advance – or doing so too late – often stand in the way of successful implementation.” Huijsman therefore agrees on the importance of looking ahead. And he adds:

Don’t do it alone

“If the idea that, as a researcher, you have to have thought everything through right from the start puts you off, realise that you don’t have to do everything yourself.” For example, you could bring a communications adviser on board at an earlier stage, or consult implementation experts within universities for advice. “Or you could ask stakeholders if they’d be willing to help during the project phase. And ask directors and managers if you can trial your concept within their organisation.”

Bear competition rules in mind

Another point to bear in mind is that you must be mindful of competition rules. Huijsman: “On the one hand, you want to involve funders as early as possible; on the other hand, you mustn’t give market players a head start that could lead to a distortion of competition. That can be tricky.” If you know little or nothing about this, check with a knowledge and/or technology transfer office to find out exactly how it works. Almost all university medical centres (UMCs) and universities have such an advisory service. “The KNAW [Royal Netherlands Academy of Arts and Sciences, ed.] also has such a service to support KNAW institutes and individual KNAW researchers with questions regarding knowledge transfer.”

“It really isn’t easy,” says Huijsman. “Implementation is a discipline in its own right.” To conclude, he shares one more tip that might help when launching your intervention: draw up a list of your stakeholders.

Make sure you gain an understanding of the various stakeholders in good time. Stakeholder mapping is a useful technique for identifying them. Huijsman: “So draw up an overview: who are they and how do you link them to your project? It’s best to do this whilst you’re still writing the proposal; in other words, before you submit it. Funding bodies are also increasingly checking whether those parties are genuinely on board. If you do this too late, it may even be a reason for them not to award a grant.”

Next, identify the factors that facilitate and hinder these stakeholders, and consider whether you need to address them. Huijsman: “If, for example, the expertise of professionals is an issue, you could look into training programmes. And if funding is an issue, you need to consider whether you can involve insurers.”

Where does Partner in Balans stand now?

De Vugt: “Things are still moving forward, but in small steps. We’re still lobbying. Together with various stakeholders, we’re looking for a sustainable funding model. On the one hand, the aim is for it to be reimbursed by health insurers. On the other hand, we want a business model that makes it affordable and viable to scale up Partner in Balans further. There is hope: Partner in Balans now has good brand recognition.”