On the day I was born
The nurses all gathered ’round
And they gazed in wide wonder
At the joy they had found
The head nurse spoke up
Said “leave this one alone”
She could tell right away
That I was bad to the bone
–George Thorogood, “Bad to the Bone”
The other day, Janet Kavanagh (our Director of Program Development for the Program for Positive Aging ) sent me a link to a blogpost from the site Agingcare.com . I looked at the site. It has a lot of great information for caregivers, who as I have noted in a past post, have one of the world’s toughest jobs. However, the link was to a blogpost provocatively titled, “How to Handle an Elderly Parent’s Bad Behavior” , and the post gave a “top ten” list of “bad behaviors” of elderly parents including: rage/anger/yelling; inappropriate comments; and paranoia and hallucinations.
All of these symptoms and others detailed in the article are extremely common behaviors seen in older people with dementia. The text of the article actually does contain some very useful tips and does acknowledge the neuropsychiatric origins of some of these behaviors. But, the sensational packaging is concerning and feels like “blaming the victim”. The article (which has been widely read and has almost 60 comments from caregivers) misses a real opportunity to educate folks who skim it and do not read the details. Labeling behaviors as “bad”, when in many cases they are due to a “broken brain”, is counterproductive at best and could be a justification for elder abuse at worst. Unfortunately, in my experience as a clinician, the view of “bad behavior” is a common one, with caregivers viewing behaviors as being done to them personally and on purpose.
What do I mean by a broken brain? Below is a graphic depiction (credit to the Bright Focus Foundation) of the normal brain on the left and the brain of a person with Alzheimer’s dementia on the right. Notice the differences?
And beyond the obvious and literal “shrinkage” of the brain in a person with dementia, the brain circuits that control behaviors including mood, impulse control, motivation, etc get interrupted. New abnormal behaviors may be created. Below is work from Sultzer and colleagues at UCLA showing brain changes in people who have Alzheimer’s disease accompanied by delusions (false beliefs like someone is stealing from them or cheating on them). The top picture shows the brain metabolism/function of a healthy person; the middle, a person with Alzheimer’s and no delusions; and the bottom, a person with Alzheimer’s and delusional thoughts. A red color indicates a higher metabolic rate, a yellow color corresponds to a lower rate (less healthy function). The person with delusions shows a LOT less red compared to the other subjects. Their brain is literally malfunctioning. Not bad behavior. Broken brain.
While the behaviors shouldn’t be called “bad”, the outcomes can be. Behavioral symptoms cause caregiver burden and distress, and are among the most common reasons a person with dementia is placed into a nursing home. But, here’s the good news. There IS help available. Caregivers who are experiencing problem behaviors with an elder should seek help from their doctor, starting with the PCP, and if needed, seek further referral to a geriatric psychiatry specialist . A geriatric psychiatrist can give further help with behavioral/environmental interventions and medications.
The Program for Positive Aging is working with collaborators at Johns Hopkins to develop an “app” that will direct caregivers experiencing these behaviors to the right ways to deal with them in real time. In addition, we are developing a “Caregiver College” to train caregivers in managing behaviors. Stay tuned for more on those. In the meantime, below are some other helpful online resources for those needing help in dealing with difficult behaviors:
- Find a Geriatric Psychiatrist : This tool (provided by the Geriatric Mental Health Foundation) helps to locate geriatric psychiatrists across the country. A geriatric psychiatrist is a medical doctor with special training in the diagnosis and treatment of mental disorders that may occur in older adults. These disorders include, but are not limited to, dementia, depression, anxiety, alcohol and substance abuse/misuse, and late-life schizophrenia.
- Alzheimer’s Association There is a 24/7 hotline (1‐800‐272-3900) to help caregivers problem-solve care challenges, and an on‐line Alzheimer’s navigator program that provides customized action plans to support the specific challenges of families.
- Alzheimer’s Disease Education and Referral Center ADEAR This is a service of the National Institutes of Health to provide latest information about Alzheimer’s disease. Offers many free helpful caregiving tip booklets.
- 36 Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease Related Dementing Illness, and Memory Loss in Later Life The classic and most comprehensive resource book that covers all topics related to dementia and caregiving. By Mace and Rabins (5th edition), Johns Hopkins University Press, 2011.
- Understanding Difficult Behavior Problems: Some Practical Suggestions for Coping with Alzheimer’s Disease and Related Illnesses This practical book (widely-used by health professionals and family caregivers) can help caregivers understand the possible causes of behavioral symptoms. It provides practical strategies for responding to common behaviors. By Anne Robinson, Beth Spencer and Laurie White (2007).
- Alzheimer’s Activities: Hundreds of Activities for Men and Women With Alzheimer’s Disease and Related Disorders. Volume 1 This book presents hundreds of activities for caregivers to engage men and women with Alzheimer’s disease (AD) and related disorders living at home or in assisted living facilities; by FitzRay BJ, Windsor CA: Rayve Productions, 2001 (fourth printing 2007), 288 pages. It includes creative ideas for everyday and special occasion activities, caregiver anecdotes, helpful tips, interesting facts, and words of encouragement. To accommodate people with different levels of cognitive and physical impairment, the book includes suggestions for simple, medium, and moderately complex activities.