As clinicians, we know that there is much more to dementia than just forgetting where you last left your keys or remembering when your next doctor’s appointment is. It’s important to remember that dementia is a decline in cognitive functioning beyond what might be expected from normal aging, and is not part of the normal aging process. The prevalence of swallowing disorders in persons over the age of 65 ranges from 15 – 23%. That percentage increases to 40-50% if that person is a long-term care resident. Clearly – dementia and dysphagia have a complicated relationship!
The World Health Organization (WHO) estimates that 55 million people are currently living with dementia and that there are an estimated 10 million new cases per year. Dementia is the seventh leading cause of death, and has physical, emotional, economic, and psychological impacts on both people living with dementia, and their caregivers. The prevalence of swallowing disorders in persons over the age of 65 ranges from 15 – 23%. That percentage increases to 40-50% if that person is a long-term care resident. More specifically, the prevalence of dysphagia in a person with dementia ranges from 23%-45% when assessed clinically and 84% – 93% when assessed instrumentally (Espinosa-Val, et al 2020
In persons with end stage dementia, 24% feed themselves, 18% require feeding assistance, and the remainder either refuse to eat entirely or choke on their food. People living with dementia may not be able to articulate that they are having increased difficulty swallowing and will manifest as refusal to eat, weight loss, coughing while eating, drooling, wet voice, and perseverative chewing (Payne & Morley, 2018
Among other eating and drinking problems in people with dementia are: food refusal, distractibility, visual agnosia, swallowing and feeding apraxia, pocketing food, spitting food, excessive swallows, rapid eating, absent chewing, and delayed or impaired pharyngeal swallow (Payne & Morley, 2018
Dysphagia can result in malnutrition, dehydration, aspiration pneumonia, weight loss, and poor wound healing as well as diminish someone’s quality of life.
Reading all those statics can be a little jarring. As clinicians, how can we support these people and their caregivers? How can we make eating and drinking with dysphagia not only safe, but pleasurable too?
Right off the top, it must be stated that placing a feeding tube in someone with advanced dementia has been proven, time and again, not to be best practice. According to the American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement:
“When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feeding should be part of usual care for older adults with advanced dementia.
” It is important that caregivers of the person with dementia are educated and supported when it comes to feeding tube placement. They need to be aware that it is not going to improve the quality of the person’s life and that it is not necessarily a safe alternative to eating by mouth.
To download our clinic tools “Say This, Not That!” series on how to use encouraging and respectful language when working with people with dysphagia, click here!
With the elimination of feeding tube placement, what can be done for people living with dementia and concomitant dysphagia? Per Hansjee (2019), there should be 5 fundamental “Ms” to consider when managing someone with dementia and dysphagia and reduce the risk for aspiration: MDT involvement, Maximizing posture, Mealtime preparation, Mouthcare, and Medication management.
This refers to multidisciplinary team involvement. As rehabilitation professionals, we know that it requires much more than just one discipline or provider to manage someone’s care along the continuum. Speech-language pathologists determine the least restrictive diet, and work in conjunction with a registered dietician to ensure that the person’s nutritional needs are being met. Pharmacists should be involved to ensure medications are being provided in the easiest to manage format, as well as the person’s general practitioner to monitor overall health status. Hansjee makes it a point to state that the person’s wishes should remain at the forefront of all decision making and having protocols in place for such situations are helpful in driving team discussions.
Hansjee states that for oral intake, the person should ideally be positioned upright in a chair instead of reclined in bed. According to Alghadir et al (2017), correct positioning improves the speed and safety of swallowing. Physical and occupational therapy should be consulted for proper wheelchair positioning and the possible use of positioning aides if needed so the person can manage sitting upright and out of bed as much as possible for meals.
Meal Time Preparation:
Per the Alzheimer’s Society in 2016, a good mealtime experience can have a positive impact on a person’s nutritional status and overall social well-being. Hansjee states that it is helpful to let the person know the time of day as well as the meal that’s being served. Also, self-feeding should be encouraged – place the food close to the person where they can easily reach it. The sight and smell of the food will stimulate the olfactory and optic nerve which will kickstart the swallowing process. Also, colorful plates can also increase overall meal intake. A study from 2014 by Chadhury and Cooke stated that 25% more food is eaten off a red plate versus a white one (interesting, right?!).
Inadequate mouthcare can lead to a whole host of problems, especially older people with dementia. As we know, poor oral hygiene can lead to aspiration pneumonia due to plethora of bacteria present in the mouth. Those people who are dependent on someone else to complete their oral care are at even greater risk. Oral care can be challenging to complete in someone with dementia due to decreased cognition and sensory impairment that accompany the disease process.
For tips on how to complete oral care in someone with dementia, check this out!
Hansjee states that staff may be tempted to crush, melt, or disperse medication contents to make them easier for the person with dementia to manage, but that may affect how they are absorbed by the body. This can cause reduced effectiveness, as well as unintended adverse side effects. Before altering medication presentation, a pharmacist should be consulted to see if that would be possible. According to Kelly et al (2011), medicine administration errors are three times more likely to occur in patients with dysphagia than in those without the condition.
These 5 M’s can be integrated into your clinical practice and into your facility with some program development, planning, and staff education.
Management of someone with both dementia and dysphagia needs to be interdisciplinary team effort and goes very beyond altering someone’s food and liquid textures. People are now living longer with the constant advancements of medical science. It is important that their lives are not only prolonged, but that there is some degree of quality to their lives. Remember, “it’s not about the years in your life, but the life in your years!”.
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