Over time people lose the ability to adequately feed themselves. In many cases that loss of ability comes because of a health condition such as Alzheimer’s Disease (AD) or another dementia. Caregivers begin to take on the role of providing the self-care basics to those no longer able to provide it for themselves. The ability to feed oneself has proven to be a major concern later in life, mostly to caregivers who find themselves in a position of needing to balance practical solutions while preserving dignity for those they care for. This delicate balance is made even more challenging at the end of life.
Managing Common Dietary Challenges
Dietary challenges can range from a person simply forgetting to eat meals to something as significant as the degradation of a person’s autonomous function; a loss in the ability to eat. As a caregiver, these concerns present challenges in preserving quality of life. On one hand, an individual’s preferences for types of food may drastically change. The person may no longer like certain foods they once enjoyed. Nutritional challenges come into the picture when a person may not be getting the proper nutrients they need to be healthy. Some elderly persons may refuse to eat at all.
Researchers with the University of Montreal looked into what particular dietary challenges were faced by caregivers when providing care to family members aged 70-90 with early-stage AD. They were interested in the ways caregivers faced these feeding challenges and how they coped with the stress. They found common feeding challenges such as:
- Changes in food preferences
- Forgetting to eat or drink water
- Forgetting how to prepare meals
- Decrease in appetite
- Inability to chew or swallow
- Inability to effectively grocery shop
Many of the caregivers had already adapted ways to “trick” individuals into eating or they had methods for reminding family members they needed to eat or drink. One participant would leave bottles of water on the tables with sticky note reminders for the elder to drink water. Others would just monitor the dirty dishes in the sink.
Facing the Challenges Armed with Nutritional and Dietary Information
Researchers wanted to see if a nutritional education program would help caregivers manage these common dietary challenges. They found the idea of an educational program impacted caregivers in a positive way and had the potential to provide promising hope to caregivers struggling with feeding issues. Participants said they would be eager to learn ways to better feed and care more adequately for their loved one, learn ways to provide better nutrition to picky eaters, and very importantly, to receive supportive help in the form of new information that would help them as caregivers improve the quality of life while still maintaining dignity for those they cared for.
If the insurance companies could adopt policies for nutrition education, healthier patients would in theory require less medical care, and caregivers could experience less fatigue; two conditions that would drastically improve long-term care.
Navigating the Challenges with End of Life Feeding Decisions
Another area that presents dignity-related challenges to caregivers is end of life decisions. Palliative care is a particularly difficult time in a caregiver’s life. Ethical dilemmas arise as decisions to withhold or expand various treatments, such as feeding therapy, are wrestled with. Feeding issues at the end of life are often controversial and highly stressful because a lot hangs in the delicate balance. Should a feeding tube that was inserted as a short term means be removed two years later after no signs of improvement? Should a feeding tube be placed when a father is suffering from multiple strokes and the end stages of heart disease? These questions push a caregiver to the edge of the line between preserving life while preserving dignity, and often at these junctures in life, the patient is no longer able to decide for him- or herself.
Researchers with the University of Toronto confronted the complexity these issues present and acknowledged that there is no simple solution. Michael Gordon, with the Baycrest Centre for Geriatric Care at the University of Toronto, affirms that such decisions involve ethical principles in addition to clinical ones. It is therefore important for caregivers to know they have resources available to them in the form of ethics consultation services.
An ethics consultation would help families work through difficult decisions and determine possible outcomes. It would present professional, evidenced-based information when value-based conflicts have arisen. Researchers found that the process of arriving at the decisions was just as important to families and caregivers as the outcome. The study concluded that, much like dementia-related feeding issues, end-of-life decisions in regard to feeding were greatly impacted by educational programs.
Knowledge is power for the caregiver. The more a caregiver knows, the better position he or she will be in to help the one in care. At the end of the day, the caregiver can only walk in the light of the knowledge he or she has, including knowledge from consultations with experts such as the patient’s doctors, ethics consultants, and relatives. Some decisions will always be tough, no matter what. Yet when caregivers have educated themselves to the best of their ability, it is easier to bear the burden of caring for someone who can no longer care for themselves in such a basic and fundamental way as being able to eat.
Gordon, M. (May 2002). Ethical Challenges in End-of-Life Therapies in the Elderly. Drugs & Aging, 19(5): 321-329. Available at http://link.springer.com/article/10.2165/00002512-200219050-00001#page-1. Last Visited March 26, 2016.
Silva, P., Kergoat, M.-J., Shatenstein, B. ((February 2013). Challenges in Managing the Diet of Older Adults with Early-Stage Alzheimer Dementia: A Caregiver Perspective. The Journal of Nutrition, Health & Aging, 17(2): 142-147. Available at http://link.springer.com/article/10.1007/s12603-012-0385-5#/page-1. Last Visited March 26, 2016.