3 research-based benefits to being involved in conversations about your health – part 2

The Bottom Line

  • When people with dementia are involved in their own care, and their needs and wishes are understood, their health and quality of life improve.
  • When caregivers take part in hospital-discharge planning, the risk of hospital readmission and the length of rehospitalization can decrease.
  • When patients are engaged in the production of hospital tools and resources, wait times may go down, and patient knowledge and skills may increase.  
  • It is important for patients and caregivers to advocate for themselves or loved ones in the care planning process. 
  • Be vocal about needs, wishes, values, preferences, and concerns and collaborate with the health care team to make health-related decisions.   

You have heard it before. When it comes to health, speaking up and advocating for yourself (as a patient) or your loved one (as a caregiver) is important. Why is this classic tune on heavy rotation, so to speak? The answer is simple. Although the message is not new, evidence shows it is worth repeating. Engagement in care planning is associated with better management of chronic conditions though personalized care planning, increased documentation and fulfillment of patients’ end of life wishes through advanced care planning, and reduced stress and burnout in caregivers of people with dementia through person-centred care (1-3). But the good news does not end there! The list of benefits and incentives is growing.   

Here are a few more benefits of patients and caregivers being involved in health-related discussions and decisions (4-10). Click on the links below to learn more.

1. Improved health outcomes for people with dementia

Did you know that when you present information in a way that a person with dementia can understand, they are able to learn and retain it (4)? This, alongside the fact that many people with dementia are able to remain independent following diagnosis, means that they should not be left out of important conversations about their health (11). Research also shows that involving people with dementia in their own care and understanding their needs and wishes improves their health and quality of life (5;6). Falls prevention is a good example of how this translates into real world results. Evidence shows that when people with dementia and their caregivers are able to provide input on falls prevention strategies, preferences, and capabilities, falls are more likely to be avoided (7). Social isolation and depression can also be kept at bay when individuals have the opportunity to share their stories, speak up, and socialize through these health-related discussions (8).

2. Reduced risk of hospital readmissions

Transitioning patients out of the hospital and into their home or another care facility is a delicate process that requires attention and consideration. If this process is not managed well, patients can suffer interruptions in care, setbacks to their health, and emotional distress (12-22). But involving caregivers in hospital-discharge planning is one strategy that can be used to make this transition more successful. In fact, research shows that when caregivers are involved, the risk of older adults being re-admitted to the hospital can decrease by 9% to 38% three months after discharge and 10% to 36% six months after discharge. Additional benefits can include reductions in the length of rehospitalizations and cost of care post-discharge (9).  

3. Enhanced service delivery and patient understanding   

Co-production refers to the process of engaging patients in the design, management, delivery, and/or evaluation of public services, such as healthcare services. Research shows that when patients are involved in co-producing hospital tools and resources, there is the potential to enhance health care professionals and organizations’ satisfaction, usability, uptake, and retention of these tools and resources. For patients, this strategy may result in decreased wait times and more timely delivery of medications they are taking at home, as well as a better understanding of the medications they are using. Improvements in patient knowledge, confidence, and skills are all positive side effects that may result from co-production (10).

Advocacy and action! Whether you are a patient or caregiver, do not forget that you have a vital role to play in making decisions that impact your health or the health of a loved one. Talk to your health care team about needs, wishes, values, preferences, and concerns and how you can work together to make important health-related decisions.    

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Author Details


  1. Coulter A, Entwistle VA, Eccles A, et al. Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database Syst Rev. 2015; 3(3):CD010523. doi: 10.1002/14651858.CD010523.pub2. 
  2. Barbosa A, Sousa L, Nolan M, et al. Effects of person-centered care approaches to dementia care on staff: A systematic review. Am J Alzheimers Dis Other Demen. 2015; 30(8):713-722. doi: 10.1177/1533317513520213.
  3. Weather E, O’Caoimh R, Cornally N, et al. Advance care planning: A systematic review of randomized controlled trials conducted with older adults. Maturitas. 2016; 91:101-109. doi: 10.1016/j.maturitas.2016.06.016.
  4. Small JA. A new frontier in spaced retrieval memory training for persons with Alzheimer’s disease. Neuropsychol Rehabil. 2012; 22(3):329-361. doi: 10.1080/09602011.2011.640468.
  5. Moore TF, Hollett J. Giving voice to persons living with dementia: The researcher’s opportunities and challenges. Nurs Sci Q. 2003; 16(2):163-167. doi: 10.1177/0894318403251793251793.
  6. Petriwskyj A, Parker D, Robinson, et al. Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative literature. Int J Evid Based Healthc. 2014; 12(2):64-86. doi: 10.1097/XEB.0000000000000003. 
  7. Meyer C, Hill S, Dow B, et al. Translating falls prevention knowledge to community-dwelling older PLWD: A mixed-method systematic review. Gerontologist. 2015; 55(4):560-574. doi: 10.1093/geront/gnt127.  
  8. Franck K, Molyneux N, Parkinson L. Systematic review of interventions addressing social isolation and depression in aged care clients. Qual Life Res. 2016; 25(6):1395-1407. doi: 10.1007/s11136-015-1197-y. 
  9. Rodakowski J, Rocco PB, Ortiz M, et al. Caregiver integration during discharge planning for older adults to reduce resource use: A metaanalysis. J Am Geriatr Soc. 2017; 65(8):1748-1755. doi: 10.1111/jgs.14873.
  10. Lim S, Morris H, Pizzirani B, et al. Evaluating hospital tools and services that were co-produced with patients: A rapid review. Int J Qual Health Care. 2020; 32(4):231-239. doi: 10.1093/intqhc/mzaa020.
  11. Hegde S, Ellajoysula R. Capacity issues and decision-making in dementia. Ann Indian Acad Neurol. 2016; 19(Suppl 1):S34-S39. doi: 10.4103/0972-2327.192890.
  12. Naylor M, Keating SA. Transitional care: Moving patients from one care setting to another. Am J Nurs. 2008; 108(9 Suppl):58-63. doi: 10.1097/01.NAJ.0000336420.34946.3a.
  13. Avoidable Hospitalization Advisory Panel. Enhancing the continuum of care: Report of the Avoidable Hospitalization Advisory Panel. Toronto (ON): Queen’s Printer for Ontario; 2011. 
  14. Forster AJ, Murff HJ, Peterson JF, et al. The incidence and severity of adverse events affecting patients after discharge from the hospital. Ann Intern Med. 2003; 138(3):161-167. doi: 10.7326/0003-4819-138-3-200302040-00007.
  15. Kiran T, Wells D, Okrainec K, et al. Patient and caregiver priorities in the transition from hospital to home: Results from province-wide group concept mapping. BMJ Qual Saf. 2020; 29(5):390-400. doi: 10.1136/bmjqs-2019-009993.
  16. Coleman EA, Boult C. Improving the quality of transitional care for persons with complex care needs. J Am Geriatr Soc. 2003; 51(4):556-557. doi: 10.1046/j.1532-5415.2003.51186.x.
  17. Naylor MD, Aiken LH, Kurtzman ET, et al. The care span: The importance of transitional care in achieving health reform. Health Aff. 2011; 30(4):746-754. doi: 10.1377/hlthaff.2011.0041.
  18. Forster AJ, Clark HD, Menard A, et al. Adverse events among medical patients after discharge from hospital. CMAJ. 2004; 170(3):345-349. 
  19. Moore C, McGinn T, Halm E. Tying up loose ends: Discharging patients with unresolved medical issues. Arch Intern Med. 2007; 167(12):1305-1311. doi: 10.1001/archinte.167.12.1305.   
  20. Roy CL, Poon EG, Karson AS, et al. Patient safety concerns arising from test results that return after hospital discharge. Ann Intern Med. 2005; 143(2):121-128. doi: 10.7326/0003-4819-143-2-200507190-00011.
  21. Dhalla IA, O’Brien T, Ko F, et al. Toward safer transitions: How can we reduce post-discharge adverse events? Healthc Q. 2012; 15. doi: 10.12927/hcq.2012.22839.
  22. Kripalani S, LeFevre F, Phillips CO, et al. Deficits in communication and information transfer between hospital-based and primary care physicians: Implications for patient safety and continuity of care. J Am Med Assoc. 2007; 297(8):831-841. doi: 10.1001/jama.297.8.831.

DISCLAIMER: These summaries are provided for informational purposes only. They are not a substitute for advice from your own health care professional. The summaries may be reproduced for not-for-profit educational purposes only. Any other uses must be approved by the McMaster Optimal Aging Portal (info@mcmasteroptimalaging.org).

Many of our Blog Posts were written before the COVID-19 pandemic and thus do not necessarily reflect the latest public health recommendations. While the content of new and old blogs identify activities that support optimal aging, it is important to defer to the most current public health recommendations. Some of the activities suggested within these blogs may need to be modified or avoided altogether to comply with changing public health recommendations. To view the latest updates from the Public Health Agency of Canada, please visit their website.