Dementia and patient engagement: not as incompatible as you might think

An estimated 57.4 million people live with dementia worldwide, (1) and unfortunately, clinical trials for dementia treatments have resulted in few pharmacotherapies – none of them curative. (2) (3) (4) For World Alzheimer’s Day, Prime Patient explore how Pharma can collaborate with people living with dementia to optimise the industry’s dementia research and patient community support.




Dementia is an umbrella term for a range of symptoms associated with an ongoing decline of brain functioning. (5) (6) The condition is common (1), can be of many types (the most common being Alzheimer’s disease) and have many root causes. (5) (6) Symptoms can include memory loss and trouble speaking and understanding. (6) Treatments have been developed for people living with dementia, but success in this therapeutic area has been relatively limited (2) – a particularly concerning matter given that the number of global dementia cases is expected to soar to 152.8 million by 2050. (1)


A pharmaceutical industry model of partnership and engagement with patients and caregivers is becoming increasingly mainstream, with collaborations taking place in the contexts of research priority-setting, clinical trial design, educational material development, and more. As patient-centric initiatives have been shown to increase the likelihood and speed of new treatments being approved for launch, (7) (8) you could reasonably expect that involving patients in drug development could help add value to pipeline treatments for the prevention or alleviation of dementia.


Underestimation of the dementia community is holding back Pharma


Through working with industry, people living with dementia receive the valuable opportunity to use their personal experience to influence programs that can improve quality of life. Furthermore, research has shown that involvement in meaningful activities can help to ameliorate the experience of loss of “self” that may be felt following a dementia diagnosis. (9) Meaningful engagement also benefits organisations, for example by enabling informed decision-making and optimisation of the relevancy and impact of their work. (10) Previously, the dementia community has not been involved with research in a collaboration capacity. (9) This may be due to a widespread belief that as dementia is mentally incapacitating and so meaningful engagement with these patients is unfeasible, perhaps due to the perception that these patients would be unable to remember the symptoms they have experienced or express their views on living with dementia.


“When people think of dementia, they think of people not recognizing who you are, or babbling incoherently …

They don’t imagine my husband – doing pull-ups at the gym, charming our house guests at a dinner party or tending to his tomatoes in the garden – as having progressive, incurable dementia.”

– Naome, whose husband, Leonard, lives with early-stage Lewy body dementia (11)


When you imagine a person living with dementia, it would be understandable to envisage somebody who is severely confused, disorientated, or unable to express themselves coherently. Indeed, the mid to late stages of dementia can present in this way. (11) (12) (13) However, in the earlier stages of the condition, symptoms can be subtle (14) and people living with dementia can lead active, sociable, and largely independent lives. (11) (15) The ability of such patients to think and express themselves clearly and thus contribute to Pharma engagement initiatives is likely to be underestimated, with the industry missing out on valuable, product-optimising insights as a result. After all, the best people to advise on what patients truly want and need are patients themselves!


“The voices of people living with dementia as co-researchers and participants have been noticeably absent. Presumptions of incapacity, stigma, and a lack of innovative methods to facilitate participation have contributed to the silence.”


–          the Patient-Centred Outcomes Research Institute, 2018 (9)


Those in the earlier stages of dementia can often give their own informed consent to be involved in research and participate independently. (For those in the later or more advanced stages, gathering consent may necessitate different approaches; for more about this, please see the note at the end of this article) Given the recent shift in dementia clinical trials towards studying potential treatments at earlier disease stages than was previously typical, (16) engaging people living with early-stage dementia in research is more relevant than ever before – and research priorities, outcomes, and outcome measurement tools need to be re-evaluated in collaboration with patients so Pharma can make the most of this new era in dementia research. Indeed, comments on FDA guidelines from 2016-18 by Saunders et al. tell us that “as Alzheimer’s disease drug trials move to an earlier phase in the disease, we must now … necessarily incorporate patient preferences in the process”. (16)




Fostering considerate collaboration


For engagement representatives to be able to play to the strengths of people living with dementia and empower them to actively contribute to research and education discussions and projects, patient engagement professionals in Pharma need a clear understanding of how to make dementia-friendly adjustments to typical ways of working with patients.


“To me, ‘meaningful engagement’ means being able to actively participate … it is the personal involvement and interaction with others that I find to be most satisfying.”


– Person living with dementia (10)


Firstly, engagement representatives should not make assumptions about each individual person with dementia’s level of understanding (17); each person is different and may experience fluctuation in their symptoms. (18)


To accommodate these fluctuations with flexibility and compassion, engagement representatives should check in with patient representatives about their individual needs so that participation can be active, comfortable, and productive. (10) As part of this, Pharma reps could proactively offer various forms of support, such as agenda guides (provided in advance of meetings and again on the day of) to help participants understand the meaning of key terms and follow conversations. Any information provided to people living with dementia should be available in summary form, as some may struggle with comprehending long documents. (10) Readiness to adapt existing forms of information is also important; for example, if a person with dementia finds reading very challenging, the option should be available to receive that information through a medium better suited to their strengths, such as a video.


Although such adaptations do come with an additional cost, without doing so, pharmaceutical companies not only risk collaboration activities bearing little fruit, but also alienating the dementia community before engagement has even been attempted. In other words, if these patients cannot be engaged with in a manner that is appropriate for their needs, it is unlikely Pharma will be able to learn from their valuable lived experience insights – meaning resources allocated for doing so will be wasted and the risk of chasing irrelevant or low-impact research and education avenues will be substantially higher.


As well as providing helpful materials, effectively supporting people living with dementia in engagement activities also requires other forms of flexibility, for example with meeting planning and timelines, as dementia can bring “good days and bad days” (19) or even significant fluctuation within a single day. (11) To prepare for scenarios like this, it would be prudent to make several sessions available for input from patient representatives, rather than pin all opportunity for insight-gathering on a single day.


Finally, some general good practices for collaborating with people living with dementia include holding meetings between 11am and 2pm, as this is a common ‘best time’ for this population, (10) and checking in with patient representatives at meetings after each agenda item to ensure the pace of discussion and time provided to think and respond is appropriate. (10) (To learn more about meaningful engagement with the dementia community, click here.)


From theory to reality


A great example of collaboration with the dementia community comes from the Patient-Centered Outcomes Research Institute (PCORI). With a goal of accelerating clinical trial recruitment and improving the lives of people affected by dementia, PCORI funded the participation of the National Alzheimer’s & Dementia Patient- & Caregiver-Powered Research Network (AD PCPRN) in PCORnet®, the National Patient-Centered Clinical Research Network. (20) AD PCPRN had 46,433 participants as of March 2019, and the network connected patients, caregivers, researchers, and patient advocates to develop, conduct, and disseminate patient-centred dementia research. Outputs of this initiative included formulation of research questions, definition of clinical trial outcomes and participation requirements, and contributions to plans for research dissemination. Meaningful engagement with the dementia community is more than possible – it’s highly fruitful too.




Contrary to historical assumptions, people living with dementia can meaningfully help to optimise the relevancy and suitability of treatment research approaches. By liberating themselves of unnecessary restrictions and welcoming straightforward tweaks to ways of working, pharmaceutical companies can gain confidence that research priorities, educational resources, and more are truly supportive of the needs of people living with dementia. Especially given the major challenges facing drug developers in this arena, patient insights have never been more valuable in not only securing a competitive edge, but also ensuring this rising patient population has the best possible chance of receiving treatment which could truly change their lives, and those of their loved ones, for the better.


  • Prime Patient is a specialist consultancy delivering strategic patient engagement solutions to achieve a triple win for patients, Pharma, and society. For more information, get in touch via


  • Our HCD Economics team has a deep understanding of how to appropriately obtain consent for patient participation in Alzheimer’s research, including aspects such as determination of capacity by senior HCPs, power of attorney, and proxies as per NICE guidance. The team also has experience in preference research, including time trade-off (TTO), which can be applied in situation where is difficult to gain information directly from patients. For more information, get in touch via





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