Dementia: What Choices Do You Have?

What is dementia?
This refers to a group of diseases that cause “confusion” with memory loss. Types of dementia include Alzheimer’s (the most common one), Vascular type (caused by small strokes), Parkinson’s-associated dementia, and others such as Lewy-Body Dementia.  Dementia is progressive and incurable, lasting from three to 10 years.  Progressive means the symptoms get worse over time. Incurable means that the memory loss is permanent. Memory loss makes it difficult to remember names and places, how to do the usual activities of living, etc.  People with dementia eventually require complete care; over half of all nursing home residents have some type of dementia.


What can be done to treat it?
There are two general ways to treat dementia.

1. Try to reverse or slow down the disease progress.
Drugs such as Aricept (donepezil), Exelon (rivastigmine), Reminyl (galantamine), Namenda (memantine), intended to slow down the disease progress can sometimes keep a person functioning longer at home, but unfortunately they have not been as helpful as we initially hoped and have shown little benefit over the long term.  
For example, although some studies have shown a 3-4% reduction in decline over a six month treatment (meaning only 3 or 4 people out of 100 taking it, don’t worsen as fast), other studies showed there was no difference in patients needing nursing home care:  over a four year period, 42 of 100 taking a treatment drug had to go into long-term care compared to 44 not taking it.  And, there was no difference in progression of disability: 58 of 100 on the drug required increasing help with their Activities of Daily Living [ADL] (bathing, dressing, eating), compared to 59 of 100 not on the drug.   When the side effects (such as nausea, diarrhea – and the cost) from these medicines are also considered, there is little meaningful benefit. [Ref. 1, 2, 3, 4, 11,12]

2. Control symptoms such as pain, depression, hallucinations (seeing or hearing things not really present) and sleeplessness.
For symptom management, there are many drugs to help.  Since most seniors have some pain, Tylenol or even small doses of morphine help calm those who can’t (or won’t) tell us they have pain; sleeping pills and occasionally antidepressants may benefit.  The antipsychotic drugs are rarely helpful.  The latest studies show that keeping the number of medications to a minimum, using behavioral approaches (a calming attitude, avoiding confrontations, etc.) as well as reducing “unnecessary” tests, procedures, and relocations works better.

What can be done to prevent it?
Keeping mentally and physically active, eating a healthy diet, avoiding obesity, and controlling blood pressure have been shown to be the most beneficial:  for example, walking daily, doing crosswords or other puzzles, learning new hobbies, eating lots of fruits and vegetables.  Forcing your brain to ‘make new connections’ helps – as in using your left hand to do things you normally use your right hand for [Ref.13].  The evidence does not support taking a lot of vitamins or any other drug to prevent this disease.  [Ref. 7, 8, 9, 10]

Why should having dementia affect a decision to have surgery or a test?
Because dementia is made worse by anything which disrupts daily routine: moving to another location, being hospitalized, having surgery, taking additional drugs or major tests – all these can, and often do, make the patient more confused, sometimes permanently.  Families and many doctors are often not aware of how sensitive these elders are to change.  [Ref. 5.]   
Because dementia is a life-limiting illness (meaning the patient will die from it unless some other disease causes death first) many families now avoid anything which may reduce that person’s ability to have quality interactions with their family.

What should a family do when their relative with dementia becomes severely ill?
Ask what effect any medical intervention, particularly a surgical procedure, may have before agreeing to it.  For example, someone with Alzheimer’s who doesn’t remember grandchildren, who requires help bathing and dressing, and who cannot walk without a walker, falls and breaks a hip.  Should he have his hip fixed?  Or, should he be treated conservatively with bed-rest, then gradually, hopefully helped to resume at least transfers to a wheelchair or to use a walker to the toilet?  The reality is that surgery is unlikely to make a difference regarding his walking or pain control, but it will usually make him more confused.  
Patients and families are encouraged to also read the other handouts available, to help them in making decisions.

1. Trinh N. Efficacy of cholinesterase inhibitors in the treatment of neuropsychiatric symptoms and functional impairment in Alzheimer disease. A meta-analysis.  JAMA 2003;289.  
2. Courtney C.  Long-term donepezil treatment in 565 patients with Alzheimer’s disease: randomized double-blind trial. Lancet 2004; 363.  
3. Kaduszkiewicz H. Cholinesterase inhibitors for patient with Alzheimer’s disease: systematic review of randomized trials. BMJ 2005;331.
4. Sink KM. Pharmacological treatment of neuropsychiatric symptoms of dementia. A review of the evidence. JAMA 2005;293.
5. Morrison RS. Survival in end-stage dementia following acute illness. JAMA 2000.;284:47-52.
6. Leys D. Poststroke dementia. Lancet Neurol 2005;4:752-9.
7. Boothby LA. Vitamin C and vitamin E for Alzheimer’s Disease. Ann Pharmacother 2005;39:2073-9.
8. Kivipelto M. Obesity and vascular risk factors at midlife and the risk of dementia and Alzheimer disease. Arch Neurol 2005;62:1556-60.
9. Staehelin HB. Micronutrients and Alzheimer’s disease. Proc Nutr Soc. 2005;64:565-70.
10. Rea TD.  Statin use and the risk of incident dementia: the Cardiovascular Health Study. Arch Neurol 2005;62:1047-51.
11. Cochrane Dementia & Cognitive Improvement Group’s Specialized Register.  June ’05, Feb’06.
12. Raina P, et al.  Effectiveness of cholinesterase inhibitors and memantine for treating dementia: evidence review for a clinical proactive guideline. Ann Intern Med 2008;148:379-97.
13. Katz L, Rubin M. Keep Your Brain Alive. 1998.Workman Publishing Co.


ACP revised 2/16