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June 8, 2014

Caring for people with Dementia

Reuel S. Amdur

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Some people suffering dementia may become unmanageable-agitated, aggressive, threatening. This situation arises especially in long-term care. Dr. Andrew Wiens, head of geriatric psychiatry at the Royal Ottawa Hospital, addressed this problem in a recent public educational session at the Royal.

According to Wiens, in assessing a demented patient’s behavior we need to try to identify the triggers which lead to the target symptoms.  Sometimes these may simply be medical problems such as urinary tract infections or constipation. 

In response to a situation, a normal brain can act quickly or after consideration, more slowly.  A portion of the brain called the amygdala makes the determination as whether to act quickly or to refer to the hippocampus for more deliberate consideration.

Auditory, visual, and somatic (touch) stimulation goes to the thalamus, which sends it to the amygdala.  There the choice is for quick response or referral to the hippocampus.  From the thalamus, the amygdala will typically go the quick response route.  The quick responses are fight, flight, food, and sex.  If the trigger is smell, the message goes directly to the amygdala and hence may go from there to the hippocampus in contrast with how the brain treats input that goes through the thalamus first.  Thus, smell has a better chance of getting through to the hippocampus for a less rapid reaction.  And so sometimes specific odors may aid in calming an older person with delirium.

Dementia, delirium, intellectual deficiency, and other neurological disorders interfere with the communication between the amygdala and the hippocampus, leading the amygdala to move to the quick response. 

Wiens spoke in praise of placebos and their use in some cases.  He demonstrated their efficacy by screening a picture of lemons, telling the audience that this viewing of the lemons was causing them to salivate.  The point?  Non-pharmaceutical means should be considered, especially because many behaviors do not readily respond to medication.

What might trigger delirium or other undesirable conditions such as aggression or withdrawal?  Among the factors are excessive stimulation, boredom, loneliness, restraints, lighting, and quality of care.  Quality of care may be addressed through hands-on training on how to use reinforcement techniques.  Lighting levels can be adjusted.  Some demented persons react well to favorite music.  Wiens showed a positive reaction in one patient suffering from marked apathy when he heard music that he liked.  For Wiens, individualizing treatment is the key.

Snoezelen is a treatment that is sometimes useful in treating dementia and delirium.  It is an approach begun in the Netherlands.  A room is furnished with a variety of things to provide a passive sensory stimulation.  A scent may be present, along with music, flowing water, etc.  Israeli social worker Rena Yadkowsky defines snoezelen as “a therapy consisting of sensory experiences delivered to stimulate the primary senses with few demands placed on cognitive ability.”  (Rena Yudkowsky.  “The magical world of Snoezelen, in http://melabev.org/761/)

Wiens said that maladaptive behavior in dementia may repeat behavior that was appropriate in a previous life situation.  A woman of 87 reacts when she is touched in the morning for dressing and such by hitting out, scratching, biting, spitting, and screaming.  When she was 20, she was faced with an intruder in her room and acted in this way.  A man irritated his son by constantly pointing to a sparrow and demanding, “What’s that?”  The man was hearkening back to when his son was three and doing precisely the same.  It is important if possible to know the cause of the behavior.

Because dementia typically progresses, with declining abilities, it is important to simplify the environment.  Exercise may also help in dementia care because the stimulation it provides is not only physical but also mental.

There are a variety of techniques that a caregiver can use in dealing with difficult behavior.  Sometimes the behavior can be ignored.  The caregiver may also play on the person’s forgetfulness.  He can say that he has to go to the bathroom, and when he comes back the person may well forget what he was insisting on.

Caring for a demented person can be stressful.  Wiens related a system proposed by University of Waterloo Donald Meichenbaum.  Prepare for the stressful event.  Confront it and handle it.  Cope with feelings of being overwhelmed.  Evaluate the coping efforts and reward yourself for them. 

To avoid people getting lost when they wander off, Wiens suggests having name and residence location being attached to the backs of clothing.

Because problematic behavior may make it difficult or impossible for someone with dementia to be placed or remain in long-term care, the Royal Ottawa Hospital and Ottawa’s Homes for the Aged developed a program to improve the care experience and quality of life for demented persons with behavioral issues.  Social worker Carmelita Cimaglia described this program to a group of social workers at a meeting of SWAG (Social Workers in Aging and Gerontology). 

The program serves a total of 12 people at a time, with daytime staffing by a registered nurse and two personal support workers.  Other shifts substitute a registered practical nurse for the RN.  Other staff include a behavioral support nurse, a half-time social worker, half-time activities coordinator, a family physician one day a week, and a geriatric psychiatrist one day a week.

This complement of specially trained staff works to stabilize behavior, to minimize the back-and-forth between long-term care and hospital.  The goal is to return the person to long-term care with a better capacity to cope in that setting.  The course of treatment is from nine to 18 months.  Cimaglia said that the treatment is “largely Montessori-based,” to give patients “a sense of accomplishment and success.” 

She sees a need for such a program for people younger than 65.  However, the existing program is vulnerable.  Families may see the care to be so good that they may bring pressure to keep patients in the unit rather than returning to long-term care facilities.  If they are successful in that effort, the unit will be unable to accept new patients needing stabilization.

The issue of abusive behavior, both by the patient and by the caregiver was explored in a presentation by Queen’s University neuropsychologist Lindy Kilik, at Regional Grand Rounds at the Ottawa Hospital Civic Campus on April 25.  She noted that there are a variety of kinds of abuse besides the overt physical forms.  Medical abuse takes place when medication is withheld or when the person is under- or over-medicated or when unnecessary chemical or physical restraint is used.  Then there is emotional and psychological abuse.  She estimates that rates of abuse range from 2% to 10%, higher for those suffering cognitive or physical disabilities.  Abuse of demented seniors by caregivers is largely emotional and psychological.  In a 2009 study of self-reported abuse, the overwhelming nature was of that type, with over half of respondents admitting to some form of abusive behavior. 

When a caregiver is depressed, abuse is more likely.  Other negative factors include an increase in hours of care needed and caring for someone with greater functional impairment.  As well, abuse is more prevalent when the caregiver is socially isolated, reliant on drugs or alcohol, experiencing anger management issues, or was a victim of child abuse.  Says Kilik, “Address the caregiver issues

...lower the risk of abuse!” 

In long-term care, aggressive patient behavior is a constant problem.  To minimize it, there should be a behavioral care plan for each person.  “No two plans should look alike.”  There should also be a personal history including interests, values, customs, food preferences, and the like.  Addressing caseload size and caseload mix is important in preventing attacks on staff and aggression by staff.  As Dr. Hugh Armstrong put it, the treatment of staff in long-term care determines the treatment of the residents.

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