Role of the home visit medical service for patients with behavioral and psychological symptoms of dementia (BPSD) living in the community
This review article was presented by the author in Symposium of the 22nd Annual Meeting of Japanese Psychogeriatric Society in Osaka, 15-16 November 2007.
Dr Toru Kinoshita MD, Kodama Clinic, 1-14-1 Ebara, Shinagawa-ku, Tokyo 142-0063, Japan. Email: firstname.lastname@example.org
Background: It is important for patients with behavioral and psychological symptoms of dementia (BPSD) in the community, who refuse to go to clinics, to be medically served by means of home visits. However, there are a few clinics in Japan that are specialized in home visits for BPSD.
Methods: The home visit medical service provided to several patients with BPSD was reviewed and the strategy for the treatment of BPSD was analyzed.
Results: It was found that the medical approach of home visits for patients with BPSD needed to be based on daily life information as well as medical information.
Conclusions: The medical service alone is not enough to provide appropriate care for patients with BPSD who are living in the community. Using the case studies presented herein, we have demonstrated the importance of ‘daily life information’ for medical intervention. Issues relating to the exacerbation of BPSD and the cooperation of caregivers in the drug monitoring system at home are also considered.
It has been reported that approximately 70–90% of patients with dementia have one or more behavioral and psychological symptoms of dementia (BPSD).1,2 Because appearance of BPSD disrupts the daily life of caregivers as well as patients with dementia, there is a large number of people in Japan affected by BPSD. In other words, BPSD can be recognized as ‘Common Symptoms’.
In our medical service, we usually visit patients with BPSD who live at home and their family twice a month. The team that conducts the home visits consists of a medical doctor, a nurse and a car driver/clerk. Patients are introduced to our service by professional caregivers staffed by the Long Term Insurance. These patients often refuse to go to hospital and/or a clinic because they lack self-awareness of their disease. In the case of marked BPSD, it is difficult for the patients and their family to live together. We always contact familial caregivers and professional caregivers in order to provide a multidisciplinary team approach for medical interventions of BPSD. In the present paper, we review the importance of ‘daily life information’ for medical intervention for patients with BPSD who are living in the community.
In the present study we qualitatively analyzed and considered the medical approach used for BPSD in the community by reviewing several of our cases with BPSD.
RESULTS AND CASE STUDIES
After reviewing the medical service provided to several patients with BPSD, it is apparent that the service alone is not sufficient to meet the needs of patients with BPSD who are living in the community. To illustrate this point, two case reports are presented for patients with BPSD living in the community who received our home visit medical service.
Case A: A 70-year-old woman with Alzheimer's disease
In this case, the patient's older sister had reported that the patient had got up at midnight and kicked her in the face. The patient herself had a marked impairment of delayed recall. The older sister wanted a doctor to prescribe a hypnotic for the patient so that the amount of uninterrupted sleep the patient had was increased. The patient had no particular physical problems. So, the prescription of a hypnotic (e.g. flunitrazepam 2 mg/day) with a moderate biological half-life at the regular dose used in adults was considered as a potential solution.
However, there is some doubt as to whether this prescription is appropriate. The following factors are taken into consideration in making the decision.
- 1For elderly people, the regular adult dose of this type of hypnotic could be too high.
- 2The biological half-life of this hypnotic is too long, so the hypnotic may accumulate in the body of elderly people over subsequent days.
- 3Because it is inappropriate to prescribe hypnotics for patients with dementia, prescription of an antipsychotic may be more appropriate.
- 4The use of psychotropic medications, including hypnotics and antipsychotics, in elderly people is contraindicated.
The story of Case A is continued below.
The house in which the patient and her sister lived is located on reclaimed land in Tokyo. The house itself is very old because it was built immediately after the last World War. The two-storied house has relatively thin walls and extraordinarily steep steps. The patient's bedroom was on the second floor, whereas her older sister's bedroom was on the first floor; these arrangements had not changed for 50 years. On the night in question, the patient suddenly got up from her bedding at midnight, walked down the steep steps and kicked her older sister in the face. The patient then went back upstairs and went back to bed.
If a hypnotic was prescribed for the patient in this case, there would be concerns about her falling because of the muscle relaxant effect of the hypnotic. Furthermore, giving regular adult doses of a hypnotic with a moderate biological half-life to an elderly person may result in the accumulation of the hypnotic in the patient's body over time, impairing their ability to walk unaided and making them somnolent during the day. Thus far, the story of Case A is based on ‘disease information’. However, the next part of the story is based on ‘daily life information’.
There are steep steps in the house in which Case A lives. She goes up and down these steep steps and it is highly likely that, as a result of the adverse effects of the hypnotic, Case A will fall down the steep steps. Similarly, even if a small dose of an antipsychotic is prescribed, there is the likelihood of the appearance of extrapyramidal tract symptoms (EPS) in this elderly patient. It is also highly likely that the patient will fall as a result of the appearance of any EPS. Thus, in the present case, the patient and her older sister were told that although it was regrettable, the hypnotic could not be prescribed. It was recommended that the patient sleep with her sister on the first floor. Often, any violence exhibited by such patients will subside following an environmental change. In addition, any risk of injury to the patient due to a fall would be decreased by such an environmental change.
Thus, the medication strategy considered in the first half of this story was changed sharply to an opposite strategy after consideration of ‘daily life information’.
Case B: An 80-year-old woman with suspected Alzheimer's disease
The 80-year-old woman described here lived alone in a house that was filled with a lot of garbage. The woman always urinated in the kitchen, so that the wooden floorboards had started to rot. She didn't change her clothes and hadn't taken a bath for several months. As part of her Long-term Care Insurance, a care helper visited the woman to provide a nursing care service. However, as a result of an exacerbated delusion of theft, the care helper, who became the target of this delusion, was no longer able to enter the house. Examination by the home visit medical service revealed that the patient had particular impairment of delayed recall ability. However, she was still able to do small shopping, such as for daily food at a nearby convenience store. Moreover, she cooked for herself using a gas stove. There were many tobacco burns in the carpet in her house.
The main points of regarding ‘disease information’ in this case are ‘urination in the kitchen’, ‘marked impairment of delayed recall’ and ‘delusion of theft’. If we were to prescribe a small dose of an atypical antipsychotic, the patient's delusion of theft may be improved. However, although it seems that such a medical strategy is appropriate on the basis of ‘disease information’, it is immediately apparent that it is inappropriate based on the patient's ‘daily life information’. The patient has severely impaired delayed recall. In addition, she lives alone and is unlikely to be compliant with any medication regimen. These sorts of situations are often observed for patients with BPSD who live in the community.
Although I was asked to visit to the patient in her home by the administration the home visit medical service, once there the patient actually said to me, ‘I am healthy and I have nothing to ask to medical doctors’. I doubted whether she needed medical intervention. However, it turned out that the patient had a prolapsed uterus and, therefore, when she went to the toilet her ostium uteri touched the bottom of the shallow Japanese-style toilet. This was why she urinated in the kitchen: using the Japanese-style toilet was unpleasant for her. Consequently, we installed a deep portable toilet in the patient's home. She used it and stopped urinating in the kitchen. There was still the danger of fire, which was a threat to the patient's neighbors. So we considered introducing helpers to take care of the patient at home or moving her into a nursing home.
In this case, when evaluating the patient's status and deciding on subsequent interventions, both ‘disease information’ and ‘daily life information’ had to be taken into account.
Incorporation of the viewpoint of ‘daily life’ into ‘assessment or diagnosis of dementia’
Dementia always progresses by itself. It is thought that to assess dementia in a community setting is to evaluate the difficulties imposed on patients' and caregivers' lives by the dementia. That is, the main problems should be identified by the collection and evaluation of ‘disease information’ and ‘daily life information’. It is thought that the principal action for the treatment to BPSD in a community setting is ‘to reduce disabilities of daily life’. Based on this premise, I propose that a medical service should be provided that combines with the need for true health care for BPSD in a community setting. This does not mean that we neglect to diagnose the disease that causes dementia. Because there is a limit to the type of medical equipment that can be taken along to home visits, greater emphasis should be placed on diagnostic procedures based on symptomatology that consistently relate to clinicopathological diagnoses of dementia. If examinations in hospitals are required, there may be actual problems. For example, in-hospital waiting time is too long for patients with BPSD. Clinics undertaking home visits and hospitals for outpatients should work together. For example, taking into consideration the burden to patients with BPSD and their caregivers to have to wait in a hospital waiting room, magnetic resonance imaging (MRI) and single photon emission computed tomography (SPECT) studies of the head should be quickly performed in hospitals, in addition to an electroencephalogram and examination of physical disease as an exacerbating factor for BPSD. In addition, medical staff of clinics undertaking home visits should make use of these results to explain the medical findings made in hospital to the patient and their caregivers at home. Then, the patients and caregivers should be consutled about any further medical intervention.
Incorporation of the viewpoint of ‘daily life’ into ‘medical intervention in dementia’
The main problems affecting patients with BPSD who live in the community can be identified using to the above-mentioned evaluation of diseases and the lives of the patients themselves. If the range of services provided by in-home medical services is conservative, most problems caused by BPSD in a community setting will not be solved. For example, if a patient has visual hallucinations, the aim of conservative treatment will be to cure the hallucinations. However, the visual hallucination itself may not always be a problem in a patient's daily life. Therefore, medical interventions for BPSD should aim not only to cure the symptoms identified by ‘disease information’, but also to improve problems that are highlighted by ‘daily life information’. The important issue is to consider assessment of and intervention for a patient with dementia with the patient and the wider community.
Role of medicine for BPSD in a community setting
For most medicines, and excepting those used in the treatment of dementia, the aim of medical treatment is so obvious that no one has bothered to described it. For example, if a patient has diabetes mellitus, the relationship between the disease and the medical treatment will be clear, with no room to be maneuver in terms of the meaning of ‘medical intervention’. The goal of treatment will be to maintain blood sugar levels such that the patient is euglycemic, as well as to prevent the development of micro- and macro-angiopathy and to reduce the risk of the acute exacerbation of diabetes. Even though these aims may not be articulated specifically, the medical treatment proceeds.
However, in the case of patients with BPSD who are living in the community, the relationship between the disease and the medical treatment becomes somewhat ambiguous. For example, in the treatment of dementia, we need to consider the relationship with the medicine: what outcomes medical intervention may have and the actual goals of treatment. The symptoms of BPSD may sometimes be serious problems in terms of the relationship between the patients and their caregivers, so using only ‘disease information’ as a guide to medical treatment is not enough. Moreover, although medical intervention is performed for the patients with dementia, we need to also think about the impact of the intervention on the caregivers. If BPSD is marked, medicating a patient may be of no use. Although it may be difficult to solve these sorts of problems for patients with marked BPSD who live at home, it must be emphasized that the role of the medical service should be to provide advocacy of a patient's rights so that the patient is not neglected.
Positioning of pharmacotherapy of BPSD in a community setting
In the guidelines put out by some countries, it is suggested that non-pharmacotherapeutic options should be considered first.3–5 Because in our clinic many patients have exacerbated BPSD due to other physical diseases or iatrogenic (drug-induced) delirium, we first try to determine which prescribed drugs the patient is using and the patient's physical condition. Non-pharmacotherapy is considered after adjusting the medication patients are on, eliminating inappropriate drugs, and treating any diseases. Some families are already burned out because of the stress associated with caring for a relative with BPSD. In such cases, we may start pharmacotherapy at an earlier stage. Even if antipsychotics are prescribed to control BPSD, excessive sedation of the patient is not our aim. From the viewpoint of difficulties in patients' daily lives, a decline in activities of daily living (ADL) is serious indeed. If our only purpose in prescribing antipsychotics is to sedate a patient, then the use pharmacotherapy is may be considered equivalent to binding the patients with a rope. When using antipsychotics, it is also necessary to ensure the safety of the patients: it is important to maximize the effects using as small a dose of the drugs as possible and to minimize any adverse effects. The decision to prescribe medicines should be made only under the following conditions: (i) any adverse effects can be predicted and properly explained to the caregivers; and (ii) appropriate monitoring by the caregivers can be ensured. The core principle of pharmacotherapy is ‘start low and go slow’,6 but to go on with continued exhaustive monitoring. If these procedures are undertaken, there will be a reduction in the unnecessary use of drugs and adverse events.
At the time of exacerbation of BPSD
There are three main causes of the exacerbation of BPSD: (i) concomitant physical disease; (ii) excessive use of drugs; and (iii) progression of the dementia itself. In some cases where there is concomitant physical disease and/or an excessive use of drugs, delirium leads to a marked deterioration in BPSD; however, we cannot necessarily distinguish between BPSD and delirium. In these cases, we should consider the possibility of delirium as a modifier of BPSD. Then, an improvement may be observed in BPSD after evaluation and treatment of the physical disease causing the exacerbation of BPSD and/or adjusting a patient's medication so that inappropriate drugs are not being administered. In the case of our clinic, more than half the cases with exacerbated BPSD are seen to be caused by concomitant physical disease and/or the excessive use of drugs.
Some examples of patients who exhibited exacerbation of BPSD that was caused by an underlying disease are given below:
Although he had visual hallucinations and delirium and was being treated for LDB, he actually had cancer of the bile duct.
She had been treated for exacerbation of BPSD accompanying Alzheimer's disease, but it turned out after a physical examination that, in fact, she had colorectal cancer.
He had dementia with BPSD with marked violence, but his BPSD improved completely after treatment of his respiratory failure.
Therefore, we should investigate other causes of delirium when a patient has BPSD that is difficult to explain by the natural course of BPSD or by symptomatology of the dementia.
We also have many cases in which exacerbation of BPSD is caused by excessive drug use. Therefore, it is necessary to reassess all the drugs prescribed to a patient. There are advantages here for in-home medical visits. Because the medical doctor performing the home visit usually provides all primary care for the patient, he/she has the chance to see all the drugs that the patient is using. So, the medical doctor has the opportunity to determine whether exacerbation of BPSD is being caused by any of the prescription and/or over-the-counter drugs the patient may be on. The drugs that may exacerbate BPSD include antipsychotics, anti-anxiety drugs, hypnotics, anti-epileptics, antiparkinson drugs, histamine H2 receptor blockers, antihistamines, and OTC drugs for the common cold etc. In the pharmacotherapy of BPSD, doctors should adhere not only to the principle of ‘additional medicine’, but also to ‘tapering or stopping inappropriate drugs’. Furthermore, changes in a patient's physical condition, such as a common cold, constipation, dehydration, electrolyte imbalance, and pneumonia, may often lead to a deterioration in BPSD. In such cases, immediate medication against BPSD is not recommended. It is better to take the patient's history and check his/her physical condition in detail.
Construction of a drug-monitoring system for BPSD in a community setting
A medical service alone cannot solve issues related to BPSD within a community. Caregivers, including family members, and care staff are required to provide an adequate service. We particularly depend on caregivers in for complicated monitoring. From the point of view of the medical service, it is important to evaluate the feasibility of the monitoring of complicated drugs by the caregivers. The caregivers who take care of patients with marked BPSD may be already too tired to undertake complicated monitoring. So, we need to know whether the caregivers are able to undertake this sort of role. This is of particular concern when the caregivers are elderly themselves, such as a spouse of an elderly patient. If a tired caregiver is not able to provide adequate monitoring, we have to identify someone else who can. When an appropriate person cannot be found in a patient's family, we often ask care staff to monitor the patient. Although the process of selecting the appropriate drugs is important, it is also necessary to ensure that there is an appropriate system in place for the patients to take their medicines. Suitable drugs, optimal doses and adequate timing of drug administration should be adjusted on the basis of results of monitoring both desired and adverse effects. If a suitable monitoring system is firmly in place, then it is certain that suitable drugs, optimal doses and adequate timing are determined. Moreover, when it is difficult to control BPSD, we (the providers of the medical service) and the caregivers may select hospitalization of the patient. After discharge from hospital, doses of drugs as determined during the period of hospitalization may not necessarily be optimal. If so, it may be necessary to adjust the dose again using the same monitoring system at home.
Monitoring of adverse events
If some adverse events can be predicted, this information should be shared with caregivers as the monitors. In addition, predicted adverse effects should be announced beforehand to the caregivers. For example, the anticholinergic effect of antipsychotics may cause anuria, which, if it persists for several hours, may result in serious physical disability. So, if we predict that anuria may result because of the use of prescribed medicines, we should tell the patient's caregivers about this risk and how they can contact us if the anuria occurs. Furthermore, we can prepare to treat the anuria in advance (i.e. we plan furture visits taking a urine drainage catheter, if necessary, with us). Any constipation caused by the anticholinergic effect of antipsychotics that persists for a week and more may result in worsening of BPSD. In addition, EPS as a side-effect of antipsychotics may cause patients to fall, resulting in serious injuries that are present for several months. As another example, if the patient is being prescribed a hypnotic, it needs to be confirmed that patient does go to sleep after taking it (and when) and the duration of muscular relaxation needs to be established. Then, caregivers should be instructed to pay particular attention during that period to increase the patient's safety. Simultaneously, a doctor should advise caregivers on how to improve a patient's environments to minimize any other risks associated with the medication the patient may be taking. For example, caregivers may be advised to erect a fence/gate in front of any steps at night and/or they may be advised to change the arrangement of the furniture within the home and the flooring material used to minimize the risk of falls.
The author thanks Ms Tomoko Honda, Ms Saori Ekoyama and Mr Yoshio Kikuchi (Kodama Clinic), as well as the care staff.