Chapter 5. BPSD: Behavioural Problems Throughout the Course of Dementia. Dr. John Puxty Dr. William Dalziel Dr. Ken Le Clair Dr. Marie-France Rivard

Transcription

1 Chapter 5 BPSD: Behavioural Problems Throughout the Course of Dementia Dr. John Puxty Dr. William Dalziel Dr. Ken Le Clair Dr. Marie-France Rivard

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3 Chapter Index Frequency of Behavioural and Psychological Symptoms in Dementia... 1 Key Clinical Points... 2 Variation in frequency and presentation of BPSD with different types and stage of the dementia... 2 BPSD and Alzheimer s Disease... 2 Common associated factors impacting on management of BPSD... 4 Evolving an Approach to BPSD... 6 U.R.A.F. Template and the 5 Key Questions Decision Tool... 7 Understanding... 8 Reflection Action Follow-up Illustrative Case Study... 16

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5 1 of 17 Pages Frequency of Behavioural and Psychological Symptoms in Dementia Detailed studies of the occurrence of Behavioural and Psychological Symptoms in Dementia (BPSD) suggest that any symptom can occur during any stage in dementia, and at certain stages virtually all patients demonstrate some type of BPSD (Reisberg et al., 1989). One study of BPSD found that 64% of patients with Alzheimer s Disease (AD) had one or more BPSD at initial evaluation (Devanand, et al., 1997). The majority of these people were living at home. Table 1 Major behavioural and psychological disturbances in dementia Depression Psychosis Agitation non-aggressive o physical (wandering) o verbal (screaming) aggressive o physical (hitting) o verbal (cursing) Resistance to care Disinhibition Diurnal rhythm disturbances Sleep disorders Sexually inappropriate behaviour In the Long-Term Care (LTC) setting Mansfield identifies ten behaviours seen in association with dementia, which especially challenge staff and caregivers (Managing and Accommodating Responsive Behaviours in Dementia Care; Cohen Mansfield, 2000). This includes pacing and wandering, general restlessness and agitation, trying to get to a different place, grabbing onto people, constant requests for attention and help, complaining and whining, repetitive sentences and questions, cursing and verbal aggression, making strange noises, and screaming.

6 2 of 17 Pages Key Clinical Points 1. Variation in frequency and presentation of BPSD with different types and stage of the dementia In general, any BPSD can occur in any dementia, however, there is some evidence of variations in terms of frequency of certain behaviours and timing in relation to both the type and stage of the dementia. This is important to appreciate if an anticipatory case management strategy is to be used, in order to minimize the likelihood and intensity of disruptive behaviours. BPSD and Alzheimer s Disease In the early stages of Alzheimer s Disease (AD) tasks requiring sustained attention, memory and problem solving abilities begin to deteriorate. These cognitive changes may result in personality changes and mental rigidity that can lead to argumentative behaviours. Caregivers or family members may interpret problems with executive functioning such as forgetting bill payments or unwise purchases as neglect of responsibilities, and the individual as being difficult. They may have concerns about safety in tasks such as driving, operating equipment or cooking, due to a lack of insight of the individual suffering from AD, creating further stress and disagreement. Problems of frustration, loss of self-esteem with low mood and depression are common in the early stages of the dementia process, and may be the main reason for consultation. Copyright CSAH 2009 Figure 1: Common behavioural changes throughout the course of Alzheimer s Disease As AD progresses into the moderate stage, patients develop more marked memory deficits, increased language impairment and a more marked functional decline. Approximately two

7 3 of 17 Pages thirds of AD patients will begin to exhibit behavioural problems in the moderate to severe stages. Common symptoms at this stage include anxiety, depression, aggression, sleep disruption and wandering. In the later stages of AD patients experience severe amnesia, apraxia (loss of purposeful movement requiring sequencing) and agnosia (loss of recognition of familiar faces or objects). The person is usually unable to recognize familiar objects or surroundings or even those closest to them, although there may be sudden flashes of recognition, especially at times of emotional reinforcement. The loss of speech becomes more pronounced and the person may still be able to repeat a few words or sentences. The relative poverty of language and loss of inhibition may result in crying out for help, loud yelling or swearing in relation to minor frustrations or changes in routine. At this stage, resistance to care is very common, particularly for what one might consider intimate personal care such as dressing, bathing and toileting. Individuals who have never felt comfortable undressing in front of others, and those who may have been victims of physical or sexual abuse, will perceive the presence of others during personal care as particularly disturbing or threatening. This is mostly the case if the environment or the care providers somehow remind them of previous abusers. In situations of intimate care, the individual may not be able to convey verbally why they are so uncomfortable. It is therefore very important to understand and convey to care providers, that resistance to care is likely the result of previous life experiences rather than a willful refusal to cooperate with the person who provides care. Difficulty in eating and swallowing are also features of late stages Alzheimer s Disease. Incontinence is also quite common, losing control of bladder and sometimes bowels. Incontinence can cause agitation (discomfort of feeling soiled). The individual may become restless, sometimes seeming to be searching for someone or something. They may become distressed or aggressive, especially if they feel threatened during intimate care. a) BPSD in dementia other than Alzheimer s Disease Some studies have found noted differences between the prevalence and type of BPSD in Alzheimer s Disease (AD) and Vascular Dementia (VaD) (Cohen et al., 1993; Tariot and Blazina, 1994), for example a higher rate of delusions in AD and a higher rate of depression in VaD (Lyketsos et al., 2000). Fronto-temporal dementia is typically associated with a higher incidence of BPSD early in the course of the illness. The reason for initial consultation is more likely to be related to behavioural difficulties than memory loss. These include disinhibition (socially tactless), impulsivity, compulsive behaviours (including over-eating), grabbing, hypersexuality, and verbal outbursts. The anatomic distribution of asymmetric atrophy in fronto-temporal dementia has been correlated with specific behavioural manifestations. More information on frontal lobe dysfunction is provided in Chapter 2 (Brain and Behaviour).

8 4 of 17 Pages 2. Common associated factors impacting on management of BPSD a) Individuals with moderate to severe dementia have an increased likelihood to suffer from adverse effects of medications, thus problems with compliance and errors in medication use increase. There is a recognized tendency towards increased use of medication, especially those with sedative or psychotropic properties, which may further impair the level of consciousness and cognition. In particular drugs with anticholinergic effects may be associated with delirium, worsening of dementia (confusion and function) and BPSD. There may be associated improvements in cognition, attention and behaviour and reduced likelihood of delirium, if the anticholinergic load is reduced. Drugs with anticholinergic effects: Major Antidepressants Antipsychotics Antihistamines/Antipruritics Antispasmotics Antiemetics Atropine Minor Diphenoxalate (Lomotil) Disopyramide (Rythmodan) Cyclobenzaprine (Flexeril) Cimetidine (Tagamet) Digoxin Furosemide (Lasix) The medications in the minor category have been shown to have anticholinergic properties by radioimmunoassay, but are less anticholinergic than the other medications listed. However, they may add to the total anticholinergic load and the potential risk of adverse effect. b) Many patients with moderate to severe dementia will often have age-related reduced renal function and multiple concomitant medical conditions. This will increase the likelihood of drug-related adverse effects, and should influence prescribing medications to these patients. Seventy per cent of nursing home residents have moderate to severe renal failure (creatinine clearance < 50) despite often only minimally elevated serum creatinine. The risk of adverse events and worsening of prognosis of dementia increases dramatically with the presence of multiple concomitant medical conditions. c) Studies of nursing home populations have shown that 70% have pain of which at least one third are constant (Marzinski, L., The tragedy of Dementia: Clinically assessing Pain in the Confused, Nonviolent Elderly Journal of Gerontologic Nursing 1991;16(6). Many patients with moderate to severe dementia may have an associated pain syndrome. Poorly controlled pain is very common and contributes to delirium, worsening dementia and BPSD. d) Caregiver burden and stress present a major issue in moderate to severe dementia both in community and long-term care setting.

9 5 of 17 Pages Certain behavioral problems are more likely to precipitate a request for admission to LTC, including: Physical and verbal aggression Night-time behavioural issues Paranoia/Hallucinations Depressive symptoms Wandering (Hope T et al. Int J Geriatr Psychiatr 1998;13(10): , Gilley DW et al. Psychol Med 2004;34(6): ) Family physicians should play a critical role in recognizing and managing caregiver issues. Caregivers may not volunteer that they feel stressed or may minimize their feelings of burden. This may be because of associated feelings of failure or guilt, or complaining about the need to provide care. It is also possible that stress may come on gradually over time. It may not be immediately appreciated until caregivers are given a period of temporary relief from their role. Family physicians have a role as proactive case managers in anticipating potential caregiver stress and reducing the risk of a future crisis. A variety of options are available including: Connecting patients with the Alzheimer s Society (e.g. First Link); Arranging home support services in collaboration with CCAC; Assessing and manage caregiver burden, stress and depression; Utilizing other members of care team to provide additional support (e.g. social worker) or refer to other health care services (e.g. Geriatric Mental Health Outreach Teams). In anticipation of a future need for LTC, a useful concept to consider is the interval of need. In thinking about the dementia and other health care issues, we relate the care need (type of care and period of time) to how it is being met through the provision of formal and informal supports. Often, once the interval of need for direct care on informal caregiver(s) regularly gets below 12 hours, caregiver stress becomes more likely. At this point consideration should be given to developing a plan for relocation to LTC within the next few months to years.

10 6 of 17 Pages Evolving an Approach to BPSD The challenge of responding to many issues and needs of caregivers and patients may be daunting to the physician. A series of tools (P.I.E.C.E.S. and U-FIRST frameworks) to guide the approach to BPSD have evolved over the last decade, and are widely used in collaborative care planning in LTC settings in Ontario. The use of five key informative questions is proposed as a guide for the physician, and to clarify the link to existing collaborative care planning frameworks: 1. What has changed and what are the main concerns of caregivers? 2. What are the consequences or risks of the behaviours or psychological symptoms, if allowed to continue? 3. What are possible contributory factors to the behaviours or psychological symptoms (think P.I.E.C.E.S.)? 4. What needs to be done? 5. How should things be monitored and re-evaluated? It is also important to appreciate that the approach to BPSD is rarely linear, and often requires several attempts at information gathering, assessment and adjustment to care plans. The U.R.A.F. (Understand, Reflection, Actions, and Follow-up) template has been proposed to explicitly link the five key questions. This template adds the important stage of reflection, where the physician, in conjunction with others, can integrate and synthesize all available information and care needs into a common strategy with clear goals and expectations. Copyright CSAH 2009

11 7 of 17 Pages U.R.A.F. Template and the 5 Key Questions Decision Tool Understanding What has changed* and What is the main concern? o Confirm target behaviours for modification o Consider KSBA-LTC, DOS Score What are the risks/consequences/urgencies?* o RISKS, 7 D s o If high risk immediately attempt to modify risk factors and consider early use of pharmacologicals (see Psychotropic Template for Physicians) What are the possible contributing factors? (think P.I.E.C.E.S.) o Physical: Drugs, Delirium (CAM), Infection, Pain, others Investigations and Labs o Intellectual: Review pre-morbid cognition information Consider MOCA (cautious interpretation in presence of mood and delirium) Think 7A s o Emotional: Think Depression (SIG E CAPS, and Cornell Scale for Depression) o Capacity (FAST) o Environmental (Think safety, security, sensory cues, structure, stability) o Social Reflection o Integrate assessments and put into context of resident, family and caregiver needs Actions What needs to be done*? o Evolve Collaborative Care Plan (think U-FIRST) o Review need for non- pharmacological and pharmacological treatments (see Psychotropic Template for Physicians) Follow-up How should things be monitored and re-evaluated? o Consider KSBA-LTC, DOS Score o Be prepared to revisit target behaviours * original 3 questions used in P.I.E.C.E.S. education

12 8 of 17 Pages Understanding 1. What has changed and what are the main concerns of caregivers? Appreciating what has changed regarding the individual, and what are the main concerns of the caregiver(s) is crucial to an appropriate and effective approach to behavioural difficulties: When a complaint about a behaviour is made, it is important to appreciate what has changed about the normal behaviour, and who is potentially affected by the behaviour. Clarifying the circumstance(s) of the change in behaviour and when it occurred, will often help flag contributory factors and timelines that provide you with the keys to deciding on the focus of further inquiry and interventions. Often a poor match between the capabilities/needs of the patient and his or her social/environmental supports contributes to the development of behavioural and psychological problems during the course of dementia. Another important component is to identify what aspects of the change are actually causing the major concerns. This helps key into the urgency of the problem. For example, a long-standing mild wandering tendency that is contained within a secure environment may change with evidence of agitation, constant pacing, and safety concerns. The urgency relates to the new agitation and increased pacing that is negatively impacting on the patient s nutrition and hydration. This may relate to a new infection (UTI), change in medications, change in caregiver or even the environment. Failure to appreciate the change and a blanket response to a complaint of wandering with anti-psychotics or anxiolytics will usually not improve the behaviour or remove the safety concern. 2. What are the consequences or risks of the behaviours or psychological symptoms if allowed to continue? While assessing the potential risks and consequences we need to consider the values and wishes of the person, their personal competency and desires for selfdetermination. Not all behaviours need to be treated and the relative urgency will vary based on the type of behaviour, relative risk (physical, emotional, social) to the patient and others, and the capacity of the environment and caregivers to adapt to the behaviour. It is important to appreciate that impact may vary depending on pre-morbid relationship with the caregiver and the frequency and/or intensity of the interaction. Often, there may be multiple risks; it is therefore critical to review all areas regardless of the behaviour. 3. What are likely contributory factors to the behaviours or psychological symptoms (think P.I.E.C.E.S.)? In community and long-term care clinical settings, most of the behavioural problems seen during the course of dementia, can be understood when we carefully examine each of the following key areas: the background and personal history of the patient,

13 9 of 17 Pages the Physical, Intellectual, Emotional health of the patient, his/her Capabilities and how well the individual's functional abilities and emotional needs are matched with the demands and challenges of his/her physical Environment, and the Social supports available in the care setting. Physical Physical discomforts (e.g. pain, hunger, tiredness), medical problems (particularly those causing pain, hypoxia or discomfort), and medication use are frequent causes of behavioural disturbances, particularly in the more advanced stages of dementia, when the person may no longer be able to verbally communicate his or her needs. Drugs that worsen confusion and memory impairment (e.g. drugs with anticholinergic properties, benzodiazepines) or further disinhibit behaviours (e.g. alcohol and benzodiazepines), can intensify cognitive and behavioural difficulties. They need to be removed as much as possible, taking care to withdraw benzodiazepines slowly in order to avoid withdrawal delirium. Intellectual An appreciation of the main syndromes resulting from structural cognitive changes helps us understand most of the behavioural and psychological symptoms of dementia. Amnesia The loss of recent recall can result in distressing accusations towards the caregiver (e.g. accusing them of never visiting or calling, or not telling them about forthcoming events). It is easy to imagine how difficult it is for family and care providers to respond to repeated accusations and complaints such as someone hid it or stole it or you never visit, when they are involved in frequent direct care activities. This associated with frequent phone calls is a common complaint by families in mild to moderate cases of Alzheimer s Disease. Scheduling visits or phone calls regularly and predictably (e.g. each Sunday) or leaving a note or reminder in a visitor s book with each visit, may help reduce these accusations. Turning accusations of not visiting or calling enough into compliments such as you like my visits so much that you find the time long between visits or it is nice to see how much you care about me..., may also help change the mood and tone of the conversation, and provide a segue to a more pleasant topic. In terms of accusations of stealing, it is usually more productive to offer help in retrieving missing items (e.g. let s see if we can find it together, or we would not want to accuse anyone unfairly of stealing if it is just misplaced ). Having duplicates of important items that can go missing (a second, identical pair of glasses, extra tooth brush, wallet, etc.) may also help care providers find items more readily, decreasing the distress of the person with dementia, and allowing more time to search for the missing item.

14 10 of 17 Pages Aphasia Expressive aphasia, particularly when the patient is aware of his or her difficulty finding the right word (for example in early stages of dementia) can cause frustration and anxiety. Offering choices of words where possible and when the person can still retrieve from a list, may help reduce some of the daily frustrations of the person living with dementia. Word substitution can lead to seemingly inappropriate requests or comments, causing frustration or consternation for the caregiver. Receptive aphasia may make it impossible for the person with dementia to comply with requests from the care provider, making them look like they are uncooperative. Making sure that care providers realize the extent and nature of the person s aphasia, and how it may lead to word substitution, inability to understand and follow through with requests is a key management strategy. Agnosia Difficulty recognizing familiar faces and objects (agnosia) may play an important role in the development of delusions. For example, in the moderately advanced stage of Alzheimer s Disease, we frequently encounter delusions related to agnosia, such as accusations that a family member or caregiver is an imposter, or reports that there are intruders/strangers in the house, when the person incorrectly perceives images of him/herself in mirrors. Agnosia can also lead to difficulties at mealtime. The individual may no longer be able to recognize that a fork will only work if the food is solid and try to use it to eat soup. Residents of long-term care homes may lose weight, as they are no longer able to figure out what is the appropriate use for each utensil. The food tray becomes much less confusing when only one type of food and utensil are in the tray. Putting only the soup and spoon and then replacing it with a plate with bite size food and a fork, and so on, will allow residents to maintain their independence and dignity even when they have relatively severe problems with agnosia.

15 11 of 17 Pages Apraxia The inability to perform a previously learnt task in the absence of sensory or motor deficits often leads to dressing apraxia, a commonly observed problem during the course of dementia. Difficulties with proper sequencing and with the fine motor coordination required to dress properly, may cause anxiety and frustration for a patient who is reluctant to ask for assistance. As described previously, assistance that allows the person to continue to dress as independently as possible such as preparing clothes in a pile, with items that must be put on first on top, is easier to accept for most patients. Apraxia can also contribute to difficulties with toileting and eating. Again, offers of assistance, particularly by an impatient, overworked or overly tired caregiver can lead to frustrated and aggressive behaviours. Families may be embarrassed to take their relatives out to restaurants as they become messy eaters, no longer able to coordinate knife and fork properly. Preparing food bite size for everyone in the household avoids the daily embarrassment of having someone cut the meat in front of a previously capable individual. Anosognosia (Don t know they don t know) Persons affected by dementia live in the present but access a world of the past, when they had intact functional abilities and were fully capable of accomplishing activities of daily living independently. They may have difficulty appreciating their needs and become angry with care providers when assistance is offered. Altered Perceptions Depth perception may be altered during the course of dementia. This may contribute to difficulties around bathing, where the depth of the water in the tub is perceived to be much deeper than it is in reality. Patients may accuse their caregivers of wanting to drown them, try to defend themselves, resist going into the tub or insist that a bath is not needed. Visual distortions may cause a patient to jump over a dark threshold that looks like a crack or crevasse or resist entering a room. Some floor coverings may be perceived as a body of water or a path full of obstacles (if bold patterns are present). Apathy: Loss of initiation Apathy occurs with damage to the medial frontal lobes. Over time, a person with cognitive impairment does not initiate conversation or activity. A person may sit in front of a meal and not touch it until a care provider initiates the activity. This is often interpreted as a symptom of depression. With dementia, the difference is that the person has lost the ability to initiate, but will participate if someone engages him or her. Conversely, someone who is depressed will not participate even if someone tries to engage him or her. The individual feels too low to motivate him or herself to interact socially, and will often complain of tiredness to cut activities short. Re-emergence of Primitive Reflexes The return of a grasp reflex can result in grabbing behaviours with potential for being perceived as difficult or dangerous. Paratonia (waxy rigidity) or a startle reflex may create the false impression of resisting care.

16 12 of 17 Pages Emotional Patients diagnosed with recurrent or persistent psychiatric illnesses prior to the diagnosis of dementia, will generally remain vulnerable to relapse and recurrences as the dementia progresses. Clinically, depressive syndromes, anxiety syndromes, and persistent agitated delusional syndromes associated with dementia appear to respond to psychotropic medications that are normally utilized for these conditions in the absence of dementia. The emotional tone of the environment becomes increasingly important as cognition declines. Our normal response depends to a great deal on non-verbal cues. Care providers that project smiling reassurance in calm environments will go a long away to avoid triggering many undesirable behaviours while reinforcing the desired responses. Functional Capabilities Another important area to explore is whether the demands of the environment (and the caregivers) are well matched with the abilities of the patient. An environment that is expecting the patient to perform at a level he/she is no longer capable of will provide many opportunities for frustration and temper outbursts. An environment that does not allow the patient to use his/her remaining abilities will foster resistance to care and aggressive behaviour during personal care activities. Environment Excessive noise and overly stimulating environments can lead to agitation. Confusing environments (frequent rearrangements of furniture, room changes, lack of predictable patterns in the environment) can lead to anxiety and frustration. As the dementia progresses, individuals become increasingly sensitive to and dependent on the external environment for structure. Relocation of the individual or change in staff may result in abnormal behaviours. Social It is important to make an attempt to understand the individual s previous life experience and ways in which they have commonly tried to respond and interact with family, friends and their environment. This would include enquiring about their: a) Life history and previous social networks This is helpful in planning for their current environment and community to be as normal as possible.

17 13 of 17 Pages Reflection b) Usual interactions and relationships with family and caregivers Changes due to the illness may have dramatically altered usual roles and responsibilities for the patient and his family, which create stress and frustrations. Strained relationships with family or caregivers may cause or worsen behavioural problems such as aggression and agitation. c) Usual interaction with peers and normal social graces (or lack thereof) Heated discussions, easily misperceived as an argument, between other residents and/or staff of a long-term care home may cause fear and/or defensiveness. d) Life accomplishments and previous interests Reminding the patient of accomplishments or focusing the conversation on previous interests and/or hobbies can be used to redirect and change the mood towards a more positive one. Once a clear understanding of the issues and concerns raised by the change in behaviour has occurred, it is helpful to consider the following key issues: Having identified the behaviour and associated causes, risk and consequences of leaving it untreated, one usually identifies multiple potential areas for action. These will have to be considered in terms of suitability, relevance and likelihood for success and prioritized or sequenced. It may be necessary, over time, to introduce or modify strategies based on caregiving resources and the response of the patient to specific interventions. For the patient there is a need to balance risk of both treatment and non-treatment of the behaviour. For example, specific co-morbidities such as cardiac disease or renal impairment may make some pharmaceutical options undesirable.

18 14 of 17 Pages Each care provider brings to the process their own perspectives, resources and ability that will support (or hinder) effective care strategies. It is important to be aware of this and be prepared to modify and negotiate roles and responsibilities. One should attempt to put the behaviours and care plan needs into context for a variety of care providers. For the family there is also a need to balance the benefit/risk of various treatments, as they often have to carry the burden and stress of decision-making. They may have some personal conflicts in regards to what they may wish versus what the patient or other family members may wish. Their ability to continue in the care-giving role may be questionable. In a meta-analysis of psychosocial interventions for caregivers, Brodaty found that structured programs such as teaching the caregiver problem-solving skills in care, were more effective in reducing caregiver stress (J Am Geriatr Soc 2003; 51: ). For the family physician there is always the issue of personal time he/she can commit in what can be very challenging and complex cases, which they may consider to be outside their usual scope of practice. Being aware of and utilizing resources that may assist care providers and the patient will make the use of the physician s time as efficient as possible. However, a consistent approach and strategy by all care providers can only be achieved when all can develop the same understanding of the causes that may contribute to the challenging behaviours. Only then can opportunities be created for reaching a common ground with the patient, caregiver(s), and family members in regards to care goals as well as individual roles and responsibilities. Action 4. What needs to be done? If time and circumstances permit, it is ideal that all parties reach some common understanding and appreciation of the possible options and alternatives. This increases the likelihood that the actions by each caregiver and the group will be consistent and supportive of the agreed care plan. Sometimes, in high-risk or urgent situations, it may not be possible to achieve complete consensus. There are several key components to the action process: Are there some initial actions that need to be done right now? This may include the need to consider the use of psychotropic medications if the risk to the person or others is high (see Chapter 8 and laminate). Consider what other interventions should be started? For example, the role of nonpharmacological strategies such as modifying the environment, caregiving processes etc. (think of the P.I.E.C.E.S. domains as multiple causes or contributory factors are the rule). What tests or additional information (including the use of tools) would be valuable?

19 15 of 17 Pages What are the important approaches to interacting with the individual by family and care providers? Who else might get involved? Chapters of the Alzheimer Society offer many programs that can assist patients and caregivers, including support groups and educational materials that can be taken home. In the province of Ontario, there is currently a group of professionals called Psychogeriatric Resource Consultants (PRC) who are available in each region. PRCs are able to provide assistance to care providers, in community and long- term care settings in the form of support, education and practical application of strategies for care that decrease behavioural difficulties. The U-FIRST training, which is integrated with the P.I.E.C.E.S. framework, has been provided to large numbers of front-line workers within both community and long-term care, as an aid to both communication and collaborative care plan developments. It may be useful to access these resources, which are listed in the tools section of this manual. Follow-up 5. How should things be monitored and re-evaluated? It is important to ensure a follow-up and monitoring strategy is in place. This should include clarifying the following points: What follow up strategy needs to be in place to ensure connection of the family physician with the patient, his or her family, and other health professionals? What ongoing monitoring strategies need to be in place, at which frequency, regarding behaviour, risks, and intervention? What needs to happen or be in place before the individuals and team (physician, care providers, family and patient) connect again? What will indicate the need to change plans in advance of the anticipated follow-up plan? Support tools that may assist the family physician: Please see toolkit section and Alzheimer Society of Ontario website for further information:

20 16 of 17 Pages Illustrative Case Study Case 1: John, a 72-yr old man with a three-year history of AD recently started to sleep on a couch downstairs whilst watching TV. He is heard by his wife to be screaming and rushing out of the house. He is found wandering the neighborhood carrying a stick and threatening passersby. The next day his distressed wife and daughter bring the gentleman to your office. You find him to be similar to previous visits and cooperative. Understanding 1. What are the main concerns and what has changed? The main concerns of the family are the risk for wandering outside the house and potential return of sudden and uncharacteristic threatening behaviour. On reviewing his cognitive deficits you note that he has problems with short-term memory, difficulty in verbal fluency (naming 10 animals), spatial orientation (clock and pentagon completion), and abstraction. His family reports that he has been withdrawing from previous hobbies (gardening and cards), and is less attentive of self-grooming. On occasions he has become lost in normally familiar situations. He appears to have a mild to moderate stage of AD with multiple deficits noted. This is the first time a disruptive behaviour of this type has been seen, and therefore represents the most important change.

21 17 of 17 Pages 2. What are the consequences or risks of the behaviours or psychological symptoms if allowed to continue? If one cannot identify the causes of this new behaviour, it may occur again and put the patient at risk of wandering outside the home, inappropriately dressed for the weather, and/or cause fear in the neighbourhood. In the immediate situation there is also a danger that a single incident may result in the patient being labeled as aggressive and threatening in an ongoing manner, which may negatively influence care providers. 3. What are likely contributory factors to the behaviours or psychological symptoms (think P.I.E.C.E.S.)? His recent behaviour likely arises from real fear of intruders as a result of a mixture of an agnosia or misperception (misinterpreting images on TV as a window or people actually in room) and grogginess on first awaking. He may well have believed intruders were threatening his family and attempted to chase them away. Subsequently, he became lost and fearful, hence his threatening behaviour. Reflection 4. His threatening behaviours are therefore likely exaggerated normal instinctual responses of defending self/family. This needs to be put into context with his normal behaviour. It would be important to discuss this with his wife and family. Actions 5. What needs to be done? The possibility of sensory miscues such as hearing or vision problems contributing to the problem should be considered. It would be helpful also to review medication use, especially alcohol and across-the-counter medication, for potential anticholinergic or somnolence effects. It would also be desirable to exclude any new medical issues such as possibility of a Urinary Tract Infection (UTI) causing delirium. Management ideally should be non-pharmacological to minimize the risk of such behaviours. This might include reducing any sensory miscues (e.g. lighting, review vision and hearing), suggesting potential changes in sleep habit, use of a snooze timer and education of family. Follow-up 6. How should things be monitored and re-evaluated? The event is situational and hopefully will respond to measures as previously discussed; however, it would be important to review and discuss the potential for similar responsive behaviours in the future.

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