What To Expect With Dementia

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November 7, 2015

Dementia is so common that most people know someone who has been affected by it. Many of us fear that it’s affecting us as well. Every time we forget where we’ve put our keys or walk into a room and forget why we headed there, we need to assure ourselves that it’s normal. Have you ever started a story, only to pause and say, “Wait, where was I going with this?” Since I’m the youngest in my group, my partner likes to say, “It makes me feel better when that happens to YOU!”

It is extremely difficult to watch a loved one decline from this disease. Our expectations of what this formerly active, able, thoughtful, clever person can do must change. If they are aware of what is happening, it can be as frustrating for them as it is for their caregivers. As a physician, I personally feel the sense of loss and realize how much more profound that is for the patient and family members.

Currently, 5 million people in the U.S. are affected by dementia. With the aging population, we expect the number to almost triple to 14 million by 2050. Alzheimer’s Dementia (AD) is the most common cause, with onset usually before age 60. The diagnosis of Alzheimers versus any other kind of dementia cannot be made readily because it would involve getting a brain sample to document the deposition of certain proteins. It is often mixed with other dementias, most commonly vascular dementia (‘mini-strokes’ and others) and less often Lewy Body dementia. The latter can involve visual hallucinations and Parkinsonian changes with tremors and multiple falls, and generally results in a more rapid course. Genetic causes make up less than 1% of AD; onset of dementia in these cases usually occurs at a younger age.

Many changes in behavior occur with progressive dementia. At first there can be mild cognitive impairment (MCI), with difficulties in ‘executive function’, meaning poor insight, and problems with abstract reasoning, organization, motivation and multitasking.

Starting at this point, it is helpful to review the medications and any supplements being taken to be sure they are not contributing to the problem and to test for thyroid function and relevant vitamin deficiencies. Also, symptoms of depression and dementia may be very similar and further neuropsychological testing may be needed in some cases to distinguish one from the other. Personality changes can vary from total nonchalance with a ‘no worries’ attitude, to marked agitation, which creates a difficult situation for family members.

Each person is different, but as time goes on, you may see:
– a gradual loss of memory until finally even family members can’t be recognized
– declining verbal abilities- starting with word-finding difficulties, then repetitive or nonsense speech, and eventually becoming non-verbal
– inability to ambulate
– inability to take care of personal hygiene
– incontinence
– weight loss due to disinterest or inability to eat, which may be compounded by medications.

At this point, medications should be reviewed again to determine which are really still necessary and which might be just increasing the risk of falls.

It is so important for patients to have an advanced directive to determine future care. When patients discuss their wishes in advance, ninety percent of health care proxies state that in a situation like this, they would prefer comfort measures. If this is clearly directed by the patient while (s)he is competent to make that decision, it ensures that the patients preferences can be respected, and it makes it easier on family members who might otherwise feel guilty limiting care when the patient can no longer state his wishes. A link to the MOLST form can be found below.

When the patient refuses to eat, tube feeding is NOT recommended. It has NOT been shown to be of benefit with respect to survival, quality of life, nutrition, or prevention of aspiration. In fact, there are actually ADDED risks involved with tube feedings, including the need for physical restraints or sedation, aspiration of stomach contents into the lungs and feeding tube blockages. So, as difficult as it may be to watch continued weight loss, it is the natural course of events in the final stage of this incurable disease.

When life expectancy is less than 6 months, hospice is a good option. This is most often pursued in advanced dementia, when the patient has minimal or no speech, is unable to ambulate, and is likely to have had at least one episode of pneumonia, urinary tract infection, deep pressure ulcer, recurrent fever or a significant eating problem. They literally can forget how to chew and swallow properly, and may even be unaware that they are hungry. Infections are to be expected, but difficult to diagnose since the patient may not be able to describe his symptoms.

Physicians are discouraged from treating for presumed infections based on behavioral changes. Unnecessary antibiotic use leads to resistant bacteria in the patient and in others sharing their space. Many patients have multiple hospitalizations in the last 90 days of life. Avoiding this pattern and letting nature take its course requires difficult family decisions if an advanced directive is not available. With hospice, supportive care can still be given, the stresses on the patient and family can be addressed, and the patient is not burdened with potentially painful workups and hospitalizations that can be frightening because of their lack of comprehension. Studies show that families have greater satisfaction with the care received when hospice is involved.

Treatment can be initiated in mild to moderate dementia. This generally includes a cholinesterase inhibitor such as donepezil (Aricept), rivastigmine (Exelon), or galantamine (Razadyne). It may be combined with memantine (Namenda). Most of these have side effects of lightheadedness, nausea or vomiting. They might decrease the rate of decline in function, but probably do not alter the overall course and have not been shown to delay the need for institutional care.

Despite what we hear in advertisements, there is no magic pill or fountain of youth. The best ways we know of preventing dementia include:
— good daily nutrition,
— at least 7-8 hours of sleep,
— regular exercise,
— social connections, and
— brain challenges. Be aware however, that playing bridge, for example will hopefully improve your bridge game but will not prevent memory loss. Discussing current events, learning a new language or doing puzzles are good ways of exercising your brain.

Interesting info regarding the joy of music in dementia can be found in an earlier article.  By introducing music that was meaningful earlier in life, you can see that smile that perhaps has been lost, and may even see your family member get up and dance or sing.

When you are with someone with dementia, think of Thu’s recent article, Behind Each Face There’s a Story. The person you’re seeing with dementia was perhaps once an articulate speaker, an athlete, a problem solver. Reminding ourselves of this can increase our compassion.  The Alzheimer’s Association has helpful advice for family members, including ways to subtly let others know about the confusion and ways to avoid frustration as a caregiver. Most importantly, when possible, the caregiver needs to take care of him or herself with sleep, exercise and free time apart from the person with dementia to refresh their own energy. Their role is emotionally and physically exhausting.  If you know someone in this situation, consider offering a few hours of your time to visit or take over to give the caregiver a ‘breather’. 

Be well —

HELPFUL RESOURCES can be found at:

Alzheimer’s Organization website – with info and caregiver support: http://www.alz.org

The National Hospice and Palliative Care Organization – www.nhpco.org

For the Maryland Medical Orders for Life-Sustaining Treatment (MOLST) Form:


Thu’s story about losing someone to dementia: https://ladydocscornercafe.com/article/behind-each-face-theres-a-story/#sthash.I6GA3Ddy.dpbs

My article about the joy of music in dementia: https://ladydocscornercafe.com/article/is-there-a-role-for-music-in-dementia/#sthash.Gt25dDpS.dpbs