Challenges of Palliative Care for Dementia
Despite its applicability for serious, life-threatening illnesses, PC is relatively new to the field of dementia care. Due to the many complicated aspects of the disease – cognitive, behavioral, physical, functional – and its progression, providing PC for dementia can pose many challenges. Even with obvious benefits to quality of life, care coordination, and economics, PC is not frequently or routinely used for dementia. The reasons for this are varied.
There are three main challenges to providing PC for dementia. These challenges are due to the disease itself, the PC model or lack of consistency thereof, and physician/provider issues.
The nature and characteristics of dementia itself may present the most complicated challenge for dementia in palliative care. Elders without dementia can pose more complex problems and disabilities than those with other serious illnesses. The aged have a greater risk of drug interactions and side effects as well (Harris, 2007). Add dementia to the mix and treatment becomes even more complicated.
The intricate presentation of behavioral, cognitive, and functional symptoms of dementia make it difficult to determine when to begin PC services. Even if a standard PC start date was somehow defined, there is currently no consensus on how to treat or manage dementia (Fox et al, 2018). To further muddy the waters are the issues of how to determine needs, assess pain, and prioritize treatment in patients unable to communicate clearly. It could be exceedingly difficult for a surrogate decision-maker or proxy to indicate preferences, make decisions, and drive priorities for treatment and therapy.
The second challenge concerns the model of PC care. There is no single model of how to coordinate care among various disciplines in relation to treatment goals. Most models believe that maintaining functioning should be the primary focus, but there is no clear method for doing this (Van der Steen et al, 2016). In the clinical research literature, there is scant evidence for the value of PC in dementia. Studies have unclear results due to small sample sizes, lack of outcome measures, and the inability of many patients to rate satisfaction with care. PC reimbursement can be a challenge to providers as can recruitment and retention of staff (NHPCO, 2018). Some hospice providers may not even provide PC services that are separate from hospice.
Another challenge for PC in dementia relates to the providers themselves. As mentioned in Fox et al (2018), one medical specialty or discipline cannot manage all the physical, psychological, social, and ethical needs of the IWD. Many primary care providers, including caregivers and physicians, have little or no education pertaining to what PC is, does, or how to access such services (Mehta, 2012). Those that have this information may not follow or be aware of the clinical practice guidelines (CPG) for quality palliative care (NHPCO, 2018). Training and certification in PC are both time-consuming and difficult. As mentioned in the section on benefits, this credentialing is a requirement for Medicare reimbursement for fee-for-service PC. Other primary care physicians and healthcare personnel may not recognize dementia as a chronic or terminal illness (Durepos, 2017) or late stage/ end of life symptoms as disease progression. For these reasons, those with advanced dementia are not routinely referred for PC. So, then, one might ask, how can I access PC services? What factors increase my chances of obtaining this support?
Sources:
Durepos P, Wickson-Griffiths A, Hazzan A, Kaasalainen S, Vastis V, Battistella L, Papaioanou A. Assessing palliative care content in dementia care guidelines: A systematic review. Journal of Pain and Symptom Management, 2017; 53(4):804-13.
Fox S, Fitzgerald C, Dening K, Irving K, Kemohan W, et al. Better palliative care for people with dementia: Summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliative Care, 2018;17:9.
Harris D. Forget me not: palliative care for people with dementia. Postgrad Med J, 2007;83:362-366.
Mehta Z, Giorgini K, Ellison N, Roth ME. Integrating palliative medicine with dementia care. Aging Well, 2012;5(2):18.
NHPCO Clinical Practice Guidelines for Quality Palliative Care, 4th Edition (2018).
Van der Steen J, Radbruch L, DeBoer M, Junger S, Hughes J, Larkin P, Gove D, Francke A, Koopmans R, Firth P, Volcier L, Hertogh C. Achieving consensus and controversy around applicability of palliative care to dementia. International Psychogeriatrics, 2016; 28(1):133-145).