Conducting Research with Individuals with Dementia

Recruitment and consent of persons with dementia requires special skills. Please consult with your university’s Institutional Review Board (IRB) and find an experienced collaborator before attempting to conduct research with this population.
 

What is dementia?

• Dementia refers to a group of symptoms associated with declines or deficits in memory, thinking, and social skills, which interfere with activities of daily living.
• Alzheimer’s disease is the most common cause of progressive dementia in older adults, accounting for over 60% of cases and affecting an estimated 5.7 million Americans.^1,2,3
• The number of older adults with an Alzheimer’s disease diagnosis is predicted to almost triple in the next 40 years.⁴
• Other progressive dementias include Vascular, Lewy body, frontotemporal, and mixed dementias.
• Huntington’s disease, Parkinson’s disease, HIV/AIDS, Creutzfeldt-Jakob and other Prion diseases, and traumatic brain injury have been linked to dementia.

Recruitment

• Convenience samples: Advertise your research opportunities at neurology clinics, with general practitioners, and at other services for older adults with dementia (e.g., caregiver support groups, adult day services).
  • Mulva Clinic for the Neurosciences may be a helpful place to start.
  • Meals on Wheels and Austin Groups for the Elderly are good community resources.
  • Contact professionals in the community who are likely to interact with individuals with dementia, such as neurologists, neuropsychologists, and speech-language pathologists.
• Create a brochure or flyer for your research study to leave in waiting rooms.
• Host in-service programs at local hospitals and support groups to contact potential participants.
• Special recruitment and consent considerations
  • Individuals with co-occurring health problems, mobility problems, and individuals with moderate-to-severe dementia are more difficult to recruit. You may need to work with a hospital or general practitioners depending on the population you wish to recruit. ²
  • You will need to take particular care to screen individuals in some manner to assure they are competent to give consent. This can be done informally based on their ability to answer screening questions or formally. See Consenting Individuals with Dementia for more information and check with your university's IRB.
• See the National Institute on Aging's ADORE resources for a respository of resources on recruitment and retention of participants.
   

Sharing Information with Caregivers

• Do not share information with a caregiver without permission from the participant or IRB approval.
• Include the individual with dementia in conversations with the caregiver.
• Continually gauge the comfort and feelings of the individual with dementia during conversations with their caregivers.
• Determine in the first interaction/session who you should contact about scheduling.
• Proxy assessment, in which a medical professional or caregiver may report on changes in status or their subjective judgment of patient qualities or abilities, is important. IRB approval is required for proxy assessment. In interpreting research findings, be aware of inherent bias, as the proxy’s view of the participant may differ from their self-assessment. ⁵
   

Communicating with Individuals with Dementia

• Individuals with dementia can have difficulty finding words, losing their train of thought, and organizing their words. They may repeat familiar words and describe objects rather than calling them by their name. They may also rely on gestures. ⁶
• Build rapport prior to beginning your research study. Develop a strategy for the individual with dementia for how they can communicate their desire to withdraw from the study and include this in your IRB application. ⁷
• Conduct sessions in a quiet environment where you can communicate face-to-face. Ensure that the participant is able to hear you adequately.
• Use simple, clear language, but make sure it is still appropriate for an adult.
• Go step-by-step through instructions or any information you are covering. Repeat, rephrase, & paraphrase information to improve comprehension.
• Check that the individual with dementia understands what you have said.
• Slow your rate of speech, as talking too fast can be overwhelming and off-putting.
• Use multimodal communication, such as writing down key information, pointing, and external visual aids.
• Try to take their perspective and not correct the individual with dementia by saying dismissive things like “You just told me that.” Instead, try to redirect the conversation away from the topic of perseveration.
• Redirect when the participant is off task.
• Pay attention to verbal and non-verbal signs of distress. Use items or activities that have been identified by the participant or a caregiver to reduce stress & help redirect, such as playing music or encouraging the participant to take a sip of water. ⁶
• For further tips, see the Compassionate Communication handout from the Alzheimer’s Association. ⁶ 
   

Research Session Guidelines

• Plan ahead and give details about what the session will look like.
• Clarify expectations around the time that the research session and activities involved will take.
• Be aware that individuals with dementia may have difficulty with attention, visual perception, reasoning, & judgment. ⁶
• Make it clear when you are switching topics. Taking a physical object and moving it out of sight for a topic change may decrease perseveration.
• Build in time for breaks.
• Encourage the participant to let you know when they need to use the restroom. Also watch for nonverbal cues such as restlessness. Respect their need for privacy.
• Make your design as flexible as possible to allow for individual adjustments.
   

Other Considerations

• Transportation services are available to take older adults with mobility impairments and individuals with cognitive impairments to the location of the study. Your research team may need to make arrangements for these services.
  • Austin Parks and Recreation Senior Transportation Program
  • Drive a Senior
  • Non-emergency Senior Transportation Services
• Have extra chairs in the hallway or waiting area for caregivers or for individuals with mobility impairments.
• Consider including formal caregiver surveys or measures in addition to interviews for caregiver data.
• If appropriate for your study, test or ask for a recent report of vision and hearing status to ensure participants are able to see and hear potential stimuli.
• Some older adults require special protections. Individuals who are institutionalized in nursing homes may be susceptible to coercion.² The research protocol must protect their ability to withdraw or choose not to participate at any time. See Consenting Individuals with Dementia for more information.   
   

1. Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013
2. Alzheimer’s Association. Retrieved from: https://www.alz.org/alzheimers-dementia/what-is-dementia
3. Centers for Disease Control and Prevention. (2018). Alzheimer’s disease: Promoting health and independence for an aging population at a glance. Retrieved from: https://www.cdc.gov/chronicdisease/resources/publications/aag/alzheimers.htm
4. Centers for Disease Control and Prevention. (2018). Alzheimer’s disease. Retrieved from: https://www.cdc.gov/aging/aginginfo/alzheimers.htm
5. Bartlett, R., Milne, R., & Croucher, R. (2018). Strategies to improve recruitment of people with dementia to research studies. Dementia, 1-11.
6. Grill, J. D., & Galvin, J. E. (2014). Facilitating Alzheimer's disease research recruitment. Alzheimer Disease & Associated Disorders, 28(1), 1–8.
7. Fields, L. M., & Calvert, J. D. (2015). Informed consent procedures with cognitively impaired patients: A review of ethics and best practices. Psychiatry and Clinical Neurosciences, 69(8), 462-471.
8. Arons, A. M., Krabbe, P. F., Schölzel-Dorenbos, C. J., van Der Wilt, G. J., & Rikkert, M. G. O. (2013). Quality of life in dementia: A study on proxy bias. BMC Medical Research Methodology, 13(1), 110.
9. Alzheimer’s Association. Retrieved from https://www.alz.org/
10. Novek, S., & Wilkinson, H. (2017). Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and strategies. Dementia, 1-18.