After a person has been diagnosed with Alzheimer’s disease or other dementia, subsequent emotional, mental, cognitive, and behavioral problems are usually blamed on the disease. Other possible reasons including behavioral disorders such as depression, anxiety, or substance abuse or ordinary human reactions to tough realities are very often ignored.
“Grandma seems terribly sad.”
“ Of course, she has Alzheimer’s”
“Grandpa has been nasty lately“.
“It’s the Alzheimer’s.
“ Uncle John doesn’t enjoy life anymore.”
“ Who would? He has dementia.”
“ Mom isn’t eating much or isn’t taking her pills or isn’t getting any exercise.”
“It must be the Alzheimer’s”.
Not necessarily. In fact, blaming dementia very often gets in the way of understanding what is really going on and doing something about it that will help.
If there were a pill that would reverse, stop, or — better yet — cure Alzheimer’s, it might be useful to understand the emotional and behavioral problems of people with dementia solely in terms of the disease. But the best pills available now only delay the unavoidable decline in memory and other cognitive functions. That’s worth doing, of course, for the people for whom the pills work. But counting on the doctor to come up with medicine that will make a big difference usually is disappointing.
People with dementia experience many of the same emotions as people without dementia, but they are at higher risk than older adults without dementia for diagnosable mood and anxiety disorders, both of which can result in declines in cognitive functioning that are similar to the decline associated with dementia.
Unlike dementia, however, depression and anxiety can be treated effectively; and if they are, the loss of cognitive functioning that is caused by these disorders can be reversed. To be clear, treating depression and/or anxiety does not reverse dementia and the loss of cognitive functioning caused by dementia. But effective treatment for mood or anxiety disorders can result in overall improvement of functioning that can make a very big difference in a person’s life.
These days, of course, the first line of response to depression and anxiety is medication. However wise that is for people without dementia, it is unwise for those with dementia. Medication can be helpful, but it can also be dangerous. At the very least, doses must usually be lower than for younger adults.
Better is to begin with interventions that do not rely on medications. Some formal psychotherapies can be helpful, such as “cognitive-behavior” and “interpersonal” therapy. Exercise, interesting activities, and social contact with people they enjoy can also be extremely helpful.
Most important is to understand (1) that people with dementia are adults with meaningful life histories, personal interests, individual desires, and a need for dignity and respect and (2) that behavioral “problems” are to a significant extent in the eye of the beholder. People with greater understanding and tolerance of behavior, that most people find trying, are generally better able to help people with dementia to get the most out of life.
I don’t mean to make this sound easy. Some people with dementia are so profoundly sad and lost in themselves that they may be impossible to reach. Some people are “scared to death” by the slightest change in routine. Some people completely deny that they have any need for help. Some people are abusive towards anyone who tries to help them, evoking responses in kind from many — if not most — of us.
But many people could be helped to overcome emotional problems that co-occur with, but are not caused by, dementia.
In an ideal world everyone with dementia would be able to get a sophisticated assessment to distinguish between the effects of dementia and other disorders and then to get the treatment that would be most likely to be effective. But in the real world there is a terrible shortage of physicians who understand the subtle differences between dementia and depression and other disorders. In the real world there is a terrible shortage of geriatric psychiatrists and other mental health professionals. And in the real world, paid and family caregivers usually do not get training and support to help them be more skillful with and tolerant of the people they care for.
Our nation needs major changes in policy to address these shortfalls. In the meantime, however, we need to understand that there are ordinary emotional causes for the sadness, disengagement, and anger experienced by so many people with dementia and that we caregivers can do much to meet human needs often neglected because of a frightening diagnosis.
Grandma is sad? Grandpa is nasty? Maybe they are clinically depressed and could benefit from treatment. Maybe she’s lonely and he feels he’s being treated like a child. Maybe it’s something else. But be careful not to jump to the conclusion that it’s because of the dementia.
Posted 4 months, 2 weeks ago at 12:08. Add a comment
The elder boom has begun, and our nation is not prepared. Between 2011 and 2030, the number of adults 65 or older will increase from 40 million to 72 million and from 13 percent of the population to 20 percent. This drives growing concerns about the viability of Social Security, the sustainability of Medicare, and the availability of a workforce to provide health and social services.
Despite widespread concern about the physical health of older adults, mental health needs are mostly not on the national radar screen, a serious oversight for five reasons.
First, contrary to the ageist assumptions of our culture, people can live well in old age, but not without mental health.
Second, mental illness has a terrible impact on physical health. People with mental disorders are more likely to have physical disorders, and people with co-occurring physical and mental and/or substance use disorders are at higher risk for disability and premature death and have far higher medical costs than those with physical disorders alone.
Third, approximately 20 percent of older adults have diagnosable mental and/or substance use disorders, including dementia. This increases to over 50 percent of older adults by age 85, mostly dementia, the prevalence of which doubles every five years beginning at age 60. The range of mental health problems also includes:
Anxiety and depression, which often co-occur with dementia
Psychotic conditions, such as schizophrenia, bipolar disorder and severe depression
Substance use disorders
Fourth, untreated mental disorders contribute to avoidable placement in institutions, such as nursing homes, driving up the costs of long-term care in the U.S. They also contribute to social isolation and high rates of suicide.
Fifth, all older adults face emotional challenges related to social and occupational role changes, diminished — but not lost — physical and mental abilities, losses of family and friends, and the inevitability of death.
Both the public and the private sectors need to take steps to meet the mental health challenges of the elder boom. These include:
Making mental health promotion a key element of the health and aging services systems.
Providing home and community-based services to enable people developing disabilities to live where they choose.
Supporting family caregivers who provide 80 percent of the care for people with disabilities.
Improving access to mental health and substance abuse services in the community.
Improving the quality of mental health and substance abuse services in the community and in residential and institutional settings such as formal and “naturally occurring” senior housing, assisted living and nursing homes.
Fostering integration of physical health, mental health, substance abuse and aging services.
Enhancing the adequacy of services for minority populations, which will grow from 20 percent to 30 percent of the older population by 2030.
Increasing research regarding effective mental health promotion and treatment of mental and substance use disorders and improving translation for research findings into practice.
Providing outreach and public education to older adults and their families regarding mental health, effective treatment and where to find resources.
Addressing the shortage of a clinically and culturally competent workforce, in part by recruiting and training more geriatric professionals and paraprofessionals and in large part by including older adults themselves in the helping workforce in both paid and volunteer roles.
Restructuring methods of financing needed services so as to make them affordable, to enhance integrated care and treatment, and to support services in the home and in natural community settings.
Making the mental health challenges of the elder boom more than a rhetorical priority in both private and public service systems.
In these times of cutback in government spending, addressing the mental health needs of older adults may appear to be an unnecessary frill. But the truth is that failing to address mental health needs will drive costs up in the long run. Ignoring this is very poor policy.
(This article is coauthored by Kimberly Williams, co-founder and Director of the Geriatric Mental Health Alliance of New York.)
