top of page 1) the state or quality of being worthy of honor and respect; 2) a sense of pride in oneself; d) self-respect...IT CAN BE FOUND IN DEMENTIA!

Just this week, I attended a lecture on how dignity should be considered one of the pillars of American medical ethics- how it has been lost along the way, and how we can reclaim it. It got me thinking about my experiences as a geriatrician and where dignity has been lost for many of the patients I have seen over the years- especially for those living with dementia.

To take a step back, let's consider what dementia is at its core- a chronic, gradually progressive deterioration of cognition that slowly erodes a person's ability to care for themselves. One of the most central features of dementia is short-term memory loss. However, there are many other cognitive domains that can be affected- visuospatial skills, motor skills, attention, language & comprehension, and executive functioning (judgement, impulse control, higher level or complex decision making) to start. The key issue to remember is that to diagnose dementia, you need the combination of cognitive impairments causing or resulting in functional loss (i.e. the ability to care for oneself).

Dementia can come in a variety of forms and often, I explain to patients and families, that one has to look at the word dementia like one looks at the word cancer- that is, "cancer" is the overarching, general term. There are multiple forms of cancer- prostate, lung, breast, colon, myeloma, etc. Each of these cancers has a different set of signs and symptoms, ways to diagnose, and treatment approaches.

The same with dementia- it's the overarching, general term. However, dementia, also comes in a variety of forms: Alzheimer's Disease, Lewy Body Dementia, Vascular Dementia, Parkinson's Dementia, Frontotemporal Dementia, etc. They each start with signs and symptoms of cognitive impairments that result in functional loss, and the initial pattern of cognitive impairments and sequence of progression can differ for each form.

To, me though, it's more of an academic issue at times because, unlike the cancers, even in this day and age, we don't have many effective or specific treatments for dementia that reverse it, slow it down, or delay the functional impairments on a long-term basis. (more on this later- it's a whole other topic...) And to complicate matters more, there is quite often an overlap of several dementia type syndromes- for example, the most common likely being Alzheimer's Dementia & Vascular Dementia. Finally, as the dementia progresses, its signs and symptoms and impairments often start to become the same, even among the different types.

Let's come back to dignity though. One of the things I aim in my practice is to preserve the dignity of each patient, and especially of the patient living with dementia. You have to respect that this is an individual human being who has unfortunately been stricken with a devastating and terrifying condition. And you have to do whatever you can to prevent the dementia from becoming their definition- to continue to see the person behind the veil and to respect them.

So, let's consider some of the issues that a person with dementia faces and how we can preserve their dignity through the process...

  • Loss of control of thoughts, of cognitive abilities- Yes, this person may have more and more difficulty remembering or learning new items. But- the person that they are is still there and there are ways to facilitate expression of thoughts, to gently redirect or guide conversations, to remind them of things in a respectful way, and to bring out things that bring them joy & meaning still. And while it may be frustrating to frequently do this, we have to remember, that many times, they themselves can be aware and terrified of what is happening to them.

  • Loss of control of physical ability to care for oneself- This can be one of the most dreaded parts of dementia and the one that most people think about when it comes to taking away one's dignity. Think about how you may feel if you could no longer bathe yourself, dress/undress yourself, move around independently, brush your teeth or shave, or especially started having accidents with urine or stool. Just as these are thoughts you don't want to think about now, the patient with dementia is feeling and thinking them also. It's hard and challenging, but privacy, patience, a non-judgmental tone and environment, and reassurance of worth and respect are critical. Finding a support network, including aides and/or other providers who can help in a professional and respectful manner can be very helpful steps in maintaining the person's dignity.

  • Loss of sense of self- past & present- Sometimes a person with dementia, especially as the process becomes more advanced, can start to forget who they are, who their loved ones are, and who they were. How can one preserve a sense of self-worth when there may be times when one doesn't even know oneself?? This can be a particularly devastating part of the syndrome- not only for the patient, but also for their support network. In these moments, as hard as it may be, it can help to gently redirect conversations or use cues such as pictures, music, or other items that were significant in the person's life to gradually bring them back. This doesn't work all the time, and sometimes, there may be periods where we must just "go with the flow" for a period of time. It can be distressing to us, but may cause less distress to the patient. Finally, giving the person a sense of purpose again can help- finding things they can do that they enjoy or enjoyed, or getting them involved in a day program or other socialization outlet.

  • Lost amongst the voices- Patients with dementia often get lost among the crowd and we have to do whatever we can to prevent that. Doctors and other providers may not address them in an interaction or people may just assume that they cannot do certain things or even participate in decision making. Becoming their advocate is one of the most vital ways to preserve their dignity. Ensure that they are spoken to and addressed directly- even in the advanced stages. Involve them in decision making as long as they have capacity. And remember, capacity can vary at different times and for different issues. Let their care team members know who this person is and was and what they enjoy or enjoyed.

As difficult as the diagnosis of dementia can be, it can also be an opportunity to start conversations with the person to understand what matters to them, what they want/don't want in care, what their wishes are as the condition progresses or changes, and how they feel you and the care team can support them through the journey. If we understand and appreciate this and throw in some kindness, patience, and respect, we can hopefully preserve the dignity of the individual. And that will go a long way.

As a geriatrician, I would be happy to help a person or family impacted by dementia understand better what it is, tease out the important aspects of goals for care, and build a community of support for the person and their care partners. Fortunately, even though we don't have effective medications or surgical treatments for dementia yet, there is a whole world of professionals trained and interested in helping. Look not only to the physicians, but also to the speech therapists, music therapists, certified dementia care providers, social workers, occupational therapists, physical therapists, recreational therapists, & day centers/programs. This entire community along with the geriatricians, neurologists, and nurses is there to help you and your loved one navigate this winding path.

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