“She’s only on a minimal dose.”
That is what the nurse in the nursing home told us when we sought to have 85 year old Mrs. T. taken off the last of the medications used to control her behaviour.
While living in an assisted living residence about five years previously, Mrs.T started having hallucinations and her behaviour started to change. The Mental Health Team was called in for a consultation. They diagnosed her as having dementia and prescribed medication to stop the hallucinations. When her dementia progressed she was moved to a nursing home, where she became resistant to personal care and being bathed and would strike out at other residents. More medication was prescribed in order to minimize her risk to other residents and to enable the staff to provide her daily care. Eventually she was on both Seroquel* and Risperdal*. When Diamond Geriatrics became involved we helped the family find another care facility. Mrs. T. settled in and in this home the staff did not find it as difficult to provide care. Consequently we began to advocate for a reduction and eventual cessation of the Seroquel and Risperdal.
At first the staff was hesitant to ask the doctor to lower the dosages of these “chemical restraints”, but they agreed, and found that they were still able to do the care. Eventually all the medication was stopped except this last small dose which they were reluctant to stop. We finally had a meeting with the Director of Care who recognized that there was no justification for keeping Mrs. T. on this last amount and in fact questioned the need for other medication she was on.
Now, a few months after the “minimal dose” was stopped Mrs. T. is more alert, talkative and responsive. She is able to focus more and follow directions more. Of course, she still has advanced dementia so the improvements are minimal. are limited. But there is no doubt that her quality of life is better and there was certainly no down side to adjusting her medication intake.
Mrs. T.’ s story illustrates many things. Most critically it shows how medication rationale can be lost in time. By the time Diamond Geriatrics began advocating for change, she was living in the third of three residences since it started and no one was questioning the dosage or whether the medication was still needed at all.
Regular review of medications is important because the conditions under which they were originally prescribed can change and diseases change and dementia progresses. Similar to medication, diagnoses “follow” people. Once they become part of a person’s medical history they are accepted as truth until questioned otherwise.
Mrs. T’s story also demonstrates how the behaviour of a resident with dementia can be misunderstood. Behaviour which we hear described as “resistant to care,” “combative,” “abusive to staff, or “difficult” is in fact the person trying to tell us they are frightened, confused, frustrated, in pain, bored, sick or sad. A person with dementia often is unable to express directly what is bothering them and so “act out.” When their needs are met after an in-depth assessment, their behaviour may change.
We can see from Mrs. T.’ experience that the sign of a good care facility goes well beyond age of the building and number of residents. A good Director of Care and well educated and open minded nurses in nursing homes or assisted living residences are an important part of what make the difference between good and poor care.
It is important to recognize that there really are times when no matter how compassionate, loving and skilled a caregiver or staff member is, a fear response will be triggered especially during personal care or bathing. Medication for these and similar situations may in fact be appropriate if behavioural interventions by the staff and medical team are unsuccessful.
Mrs. T’s experience reminds how important it is that people have an informed advocate as they become involved in care and medical systems, whether the system is home care services, nursing homes and other Seniors residences, or hospitals. An advocate does not have to be critical or judgmental or oppositional with staff; a good advocate has an approach that enables them to become part of a care team, bringing additional knowledge, points of view and support to the professional caregivers. For this to happen, however, the care staff have to be willing and open to accommodating this role.
Family members of residents are often the best advocates but may live out of town, or be limited due to competing priorities such as their children or work. Sometimes family members feel they do not have the knowledge to know when or how to intervene, may lack the confidence to do so, or feel intimidated by professionals and systems. Remember you have the right to ask and to advocate for your family member. It may help you to engage the services of a professional advocate who is experienced with medical systems and has the knowledge to help, such as Diamond Geriatrics.
*Seroquel (Quetiapine) and Risperdal (Risperidone) were both originally used as anti psychotic medications. Although used to control anxiety and other behaviours, this was not their original use. Even low doses can have significant side effects such as drowsiness, impaired thinking, and can increase risk of falls.
Quick Tips on What to Ask About Medications
Everyone has the right to know about the medications prescribed for us or for a loved one. It is our belief at Diamond Geriatrics that any time a physician/nursing home adds a medication or changes the dosage the family should be notified. Medications are added or changed for a reason and family members have a right to know what that reason is and what it means.
Here are a few simple questions which caregivers and family need to ask about medications used for behavioural intervention:
- Why is the medication being added or changed?
- What kind of assessment was done and what are the possible problems which may be causing the problem?
- What else has been tried?
- What are the potential side effects of the medication? Interactions with other medications?
- How will this impact on the quality of life?
- How and when will the necessity for this be reviewed?
- If the medication is for behaviour or cognitive symptoms, what can be modified in the approach of staff or environment that might help?
And remember, you can always go to your local pharmacist and ask about medications and interactions. That is their area of expertise.