Assistant Professor, Family Social Sciences, Faculty of Human Ecology, University of Manitoba; Masters in Applied Psychology; PhD in Sociology and Equity Studies in Education
Palliative Care and Dementia

The author would like to acknowledge that this literature review was part of a larger study conducted in the context of a two year Post Doctoral Health Science Centre Fellowship supervised by Dr. H.M. Chochinov, at the Manitoba Palliative Care Research Unit, Cancercare Manitoba.
 
End-of-life Care and Dementia

Summary 
Given the aging population, and subsequent increase in the prevalence of dementia, increased focus must move towards addressing the quality of life for this population. A palliative care approach to ensure quality end of life addresses the holistic sense of one’s personhood. Further, staff training and environment infrastructure are integral to the overall well-being of the individual with dementia.   
 
Introduction
A growing body of research exists on the topic of people living and/or dying with dementia, although little attention has historically been paid to this demographic. Recent literature acknowledges that two out of three seniors with dementia may be living independently in communities (Hawranik and McKean1). People likely live for many years post-diagnosis, suggesting that living with dementia in this context demands a renewed understanding of “end-of-life”. Care measures must be adapted to suit this long trajectory and the many “healthy” years of independent living with a medical terminal condition.

Dementia and Person Centred Care
A person centered approach to formal care at end-of-life is described by Magai and colleagues2; they suggest that attention be paid to behavioral and non-verbal communications of those dying with dementia. It has been recognized that some people in late stage continue to be expressive in a range of ways which may not be verbal, but which are clearly communicative. Kitwood3, Roger4 and others discuss a person centered approach to care for those living with dementia, including the importance of recognizing their personhood, in addition to the symptoms of the disease. This person centered approach blends well with the primary goals of palliative care, where “being” with a person is as important as “doing” something for them.

Decision Making and End-of-Life
Decisions to withhold or terminate treatment are common clinical dilemmas for professionals and family when patients are dying; it has, therefore, become more common to consider prior documentation of end-of-life care wishes. Moskop5 found, in the competent population, that research participants noted benefits to having an advanced care plan (i.e. pain and symptom management, control, relieve burden). On the other hand, Rich6 argued that health directives are futile as the loss of a personal self and a decisional capacity undercuts any future value a plan may have (e.g. it is not valid to make decisions for an unknown future self). It is however accepted that more communication between professionals, family and people dying with mental health conditions must occur.

Counselling and Spirituality
 The subject of grief emerges in the literature on informal caregiving , yet grief is not discussed from the perspective of a person with dementia. Arehart-Treichel7 suggests that care providers assess the well-being of people with dementia more poorly than the individuals themselves do. This view may limit the types of counselling services made available to people with dementia. With a long trajectory of decline, grief is likely an important aspect of the experience for the person with the diagnosis. Chochinov8 provides a useful intervention that highlights the dignity of the person as part of the dying process, work that could well be applied to this population in the future.

Training the Care Providers
The research suggests that attention to dementia related needs may not always happen effectively, since nursing home residents dying with advanced dementia have not been perceived as having a terminal condition (e.g. dementia was seen as a natural part of aging) (Mitchell et al9). Developing better training and supports for care providers could improve the well-being of those with end-stage dementia.

Primary Settings of Care
Primary settings of care become most important when determining the well-being of the institutionalized individual living with dementia. Briller and associates10 examined the associations between environmental design features of nursing home special care units and the incidence of aggression, agitation, social withdrawal, depression, and psychotic problems among persons living there who had Alzheimer's disease or a related disorder. A decline of negative behaviors and affect was found, for example, when quiet spaces and more privacy were instituted.

Conclusion
Not enough attention has been paid to understanding what this diagnosis means to people living with dementia, or to what extent their end-of-life experience has been shaped by their environments, available care practices, broad based social stigma, and false interpretations regarding pain and suffering. Research and care practices increasingly address these issues to improve the well-being of those living with dementia, a terminal medical condition.



References

  1. Hawranik P, McKean E. The abuse of older people: issues and prevention strategies. In: Ateah C, Mirwaldt J, editors.Within our reach: preventing abuse across the lifespan. Black Point, Nova Scotia: Fernwood Publishing, 2004: 90-123.
  2. Magai C, Cohen CI, Gomberg D. Impact of training dementia caregivers in sensitivity to nonverbal emotional signals. Int Psychogeriatr 2002;14:25-38.
  3. Kitwood T. Dementia reconsidered: the person comes first.Buckingham, England: Open University Press, 1997.
  4. Roger K. It’s a problem for other people, because I am seen as a nuisance: hearing the voices  of people with dementia. Alzheimer’s Care Quarterly 2007;8(1):17-25.
  5. Moskop J. Improving care at end of life: how advance care planning can help. Palliat Support Care 2004;2:191-7. Available by following this link
  6. Rich BA. Personhood, patienthood, and clinical practice: re-assessing advance directives. Psychol Public Policy Law 1998;4(3):610-28.
  7. Arehart-Treichel J. For Alzheimer’s patients, life may be better than caregivers think. Psychiatr News 2004;39:14. Available by following this link 
  8. Chochinov H. Dignity-conserving care — A new model for palliative care: helping the patient feel valued. JAMA 2002;287:2253-60.
  9. Mitchell SL, Kiely DK, Gillick MR. Nursing home characteristics associated with tube feeding in advanced cognitive impairment. J Am Geriatr Soc 2003 Jan;51(1):75-9. Available by following  this link
  10. Briller S, Proffitt M, Perez K, Calkins M, Marsden J. Creating successful dementia care settings. Vol 2. Winnipeg, Manitoba: Health Professions Press, 2001.