The Longest Day – a look at Alzheimer’s Disease

  • Worldwide, 50 million people are living with dementia and it’s estimated to increase to 152 million by 2050.
  • 16.3 million family and friends provide care to people with Alzheimer’s and other dementias in the United States alone.  In 2019, these caregivers provided an estimated 18.6 billion hours of unpaid care, an estimated value of $244 billion.
  • The current annual, global cost of dementia is estimated at US $1 trillion, a figure set to double by 2030.

Medical Research Network supports patients with Alzheimer’s Disease by reducing their burden of participation in clinical trials. When MRN services are employed, trials are more attractive to potential participants and visit schedule can be flexible, adding benefit to patients and their caregivers.

MRN have treated over 250 patients and delivered over 3,000 visits for Alzheimer’s patients.

A recent survey by the London School of Economics and Political Science found that for caregivers:

 • Majority of caregivers expressed positive sentiments about their caring role

• 52% of caregivers said their health had suffered

• 49% of caregivers said their work had suffered

• 62% of caregivers said their social life had suffered


In Alzheimer’s disease, trial recruitment is often a joint decision between a primary caregiver and the patient. In 2008, Karlawish, Cary, Rubright, and Tenhave reported in Neurology the results of conjoint analysis to determine the impact of various elements of trial design that contributed to a decision to consent by the patient: caregiver dyad for 108 patients across eight clinical trials. Home visits had the strongest impact on willingness to consent, raising willingness from 17% to 27% of patients. When coupled with a low-risk trial and a higher probability of getting an active drug (rather than placebo), this rose to 60%. The worse the cognitive function of the patient, the stronger these correlations became. It is also worthy of note that Karlawish, Casarett, Klocinski, and Sankar reported that for those who agreed to participate, both the caregiver and the patient tended to agree on participation, whereas in those who refused to participate more commonly the caregiver refused, yet the patient desired to participate. This implies that tools to aid the caregiver – often the need for convenience, reduction in expenses, and the ability to be seen out of hours or at weekends – are critical and may explain the strong impact of home visits in these  therapeutic areas, where, otherwise, it may be felt that the patient is less concerned about convenience, making this a particularly important component.

Clinical trials will run faster and better if the patient’s and caregiver’s needs and wants are taken into account. This way of thinking should guide all future trial design in this therapy area to benefit all the stakeholders, not just the patient.

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Wylie, Graham, The Perfect Platform.  International Clinical Trials, February 2018

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