WRITING SAMPLE ADRD and policing policy backgrounder

Dementia and Policing: Developing Best Practices for Law EnforcementPolicy Backgrounder

Corinne AlstromPlacement Student, Public Policy and Program Initiatives, Alzheimer Society of Ontario

Preamble

RationaleThe past few years have seen increasing media reports across Ontario of people with dementia being in contact with law enforcement across Ontario.

The Law Commission of Ontario (LCO) released a Framework For The Law As It Relates To Older Adults.

As a result of the Long-Term Care Homes Act of 2007, it is now mandatory for long-term care staff to report “alleged, suspected, or witnessed” abuse or any criminal activity to police (Queen’s Printer for Ontario, 2011, section 98). This legislation may have led to more police involvement in long-term care.

The present document explores the following topics as they relate to law enforcement:

Law enforcement strategies Driving Wandering Responsive behaviours

MethodologyMethods of inquiry included the following:

A literature review of articles and studies from peer-reviewed journals; news stories; and policy documents relating to dementia and law enforcement involvement.

Sixteen Key Informant interviews ranging from fifteen minutes to one hour. Key Informants were sought from all over Ontario, as well as a few from the United States with special expertise or experiences. These included staff of local Alzheimer Societies, senior services, hospitals, as well as authors of journal articles, researchers, geriatric specialists, task force members, and specialists in police education.

A survey of all local Alzheimer Societies in the Ontario federation. The survey closed January 31, 2013, with 53 respondents from 24 of the 38 local Societies; most were from Sault Ste Marie and Algoma District, Greater Simcoe County, Belleville-Hastings, and Elgin St Thomas. The majority of respondents (approximately 67%) identified themselves as First Link, Public Education, or Family Support Coordinators, and described the service area of their local Society as a combination of urban and rural.

Major themesSeveral overarching themes became prevalent in the analysis of the dialogue with Key Informants, and open-ended survey responses. These included:

PreamblePage 1 of 21 Jan 2013



The importance of proactive intervention. Law enforcement professionals and community workers both put forward that law enforcement involvement in a situation is a result of a failure of the social safety net to prevent the situation from escalating into a crisis. Regardless of the subject discussed, those who work with people who have dementia stated the importance of planning ahead to prevent crises requiring police involvement. Without a secure support system, law enforcement may become the primary intervention in an individual’s life.

Ambiguity and inconsistencies. When law enforcement does become involved in the life of a person with dementia, Key Informants reported “luck-of-the-draw” services, based on physical location, law enforcement division, and the specific officer or other worker assigned to intervene. When relevant legislation or regulations are in place, Key Informants reported a wide variety of interpretations of such policies. Some Key Informants reported a police service that actively liaises with key community and healthcare services during or prior to a crisis; some reported the opposite. Informant experiences ranged from horror stories, to stories of liaising with police for excellent results for people with dementia. The amount of ambiguity may create issues with system navigation: families may not necessarily know where to turn for help, as every door can lead to a different outcome.

Subjects beyond the scope of this paper Wandering is not discussed in great depth in the present document due to the concurrent

development of a “wandering prevention” program by the Alzheimer Society of Ontario. The Safely Home program, previously managed by the Alzheimer Society of Canada, has been turned over to MedicAlert, becoming MedicAlert Safely Home.

Key Informants working in community housing reported that it is not uncommon for criminals to use the home of a person with dementia as a base for illegal activities such as selling drugs. Despite the limited insight of the tenant with dementia, discovery of the illegal activity taking place in their home may lead to an eviction risk, and entry into the shelter system.

There were references in the literature, and from Key Informants, about people with dementia making repeated calls to 911 due to the paranoia, hallucinations, and delusions that are often symptoms of dementia.

As a result of time limitations, elder abuse has not been explored in depth in this document. Alzheimer Society of Canada has an extensive literature review on the subject of elder abuse, prepared in 2010

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Law enforcement strategies

A limited body of guidelines exists for law enforcement professionals who encounter people with dementia in their work. For example, it is suggested that police officers be aware of persons living with dementia in their community, patrol or division (ADRDA, 1987). Currently recommended strategies for reducing anxiety include controlling the tone of one’s voice, removing one’s cap, using humour, or talking about pleasant or familiar things (Alzheimer Society of Toronto, 2003).

Depending on the life experiences and ideologies of the individual in question, contact with law enforcement may be a calming or upsetting situation. One Key Informant reported that a community relations officer (CRO), when he had time to prepare, asked long-term care staff ahead of time whether he should arrive in or out of uniform.

Doty and Caranasos also make a poignant statement about body language:

A primary concern of law enforcement officers is the constant precaution for life-threatening situations. They approach each situation mindful of immediate danger and their responsibility to enforce the law. After officers ensure safety, they evaluate the situation, such as an assault or felony, in terms of authority to arrest. A situation involving memory loss patients, however, should incorporate conciliatory procedures (1990, p 357).

When police do come into contact with someone who has dementia, recommended communication strategies include: speaking slowly and clearly; using the individual’s name; maintaining eye contact; isolating the person from the situation in order to reduce potentially distracting stimuli; using body language such as pointing; repeating information or questions if necessary; and starting by asking for identification, as this is often remembered (ADRDA, 1987). 32.5 percent of respondents to the survey of local Alzheimer Societies hoped for increased communication skills on the part of police.

Law enforcement as interventionMany care partners of persons with dementia do not seek help from community services until some kind of crisis has occurred; thus, law enforcement may be used as a social safety net where other services have failed, or not yet been accessed (Pratt et al, 2006 in McAiney et al, 2008; Lachs, 2005). Thus there is a high likelihood of law enforcement professionals being the first to intervene with person with dementia, either pre- or post-diagnosis. One Key Informant knew of police who were often called to a the home of a person with dementia (as a result of paranoia) using the opportunity to check on the individual’s activities of daily living (ADLs).

The Alzheimer Society of Canada document “The importance of early diagnosis” states that fewer than 25% of cases of Alzheimer’s disease in Canada are diagnosed (Feldman et al, 2008). Among the possible

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reasons provided are “lack of time and ability to screen for dementia, lack of knowledge about dementia, lack of symptom recognition, and belief that early detection increases patient and caregiver distress.”

As a result of underdiagnosis, lack of caregiving resources, and lack of public funding for community services, contact with law enforcement may be a the first indication of dementia in an individual, for themselves or a family member (ADRDA, 1987). This contact may result from such incidents as dangerous driving, excessive calls to emergency services, indecent exposure (unintentional), wandering, abuse and other victimization such as theft or fraud, or perceived shoplifting due to an individual with dementia forgetting to pay for an item. Therefore it is important for law enforcement and other first responders to learn how to interact with individuals who have dementia in order to avoid provoking a response.

Despite this perceived trend toward increased police involvement, and a potential opportunity to play an important role in early intervention, it appears that there is no unified policy regarding law enforcement intervention with persons with dementia. When asked to name one thing that should “always happen” when police work with someone who has dementia, 42.5 percent of Alzheimer Society survey respondents expressed a desire for more training, and for police to understand dementia and responsive behaviours better. 32.5 percent hoped for increased communication skills on the part of police, and 22.5 percent wanted to see more referrals to the local Alzheimer Society or another local community service. Asked to name one thing that should “never happen” when police work with someone who has dementia, 61.1 percent noted some variation on restraint, arrest, criminal charges or imprisonment. 13.8 percent noted disrespect for the individual with dementia and their family and care partner(s) as something that should never happen.

Key Informants and survey respondents expressed concerns about people with dementia being entered into the legal system instead of receiving necessary medical assistance. Many responsive behaviours occur as a result of physical discomfort; this could be a sign of delirium, infection, pain, or other medical issues (MAREP). However, it was reported that hospital contacts were reluctant to encourage people with dementia being taken to hospital due to concerns about alternate level of care (ALC).

One Key Informant noted an increasing shift toward law enforcement as first responders in mental health crises, and expressed that this trend has been of concern to police. It is seen as a failure of the safety net when a situation ought to have been resolved within the healthcare system or social services sector is being addressed by the police. The situation has been allowed to escalate from a medical or mental health issue to a public safety issue requiring police involvement. The Informant argued that the aim of policy should be to reduce law enforcement involvement in mental health situations, of which they consider dementia to be one, by investing government funds in medical and mental health services, rather than in police services.




Although intervention with persons with dementia is up to an individual officer’s discretion on a case-by-case basis. The implementation of mental health policy may provide some guidance as to appropriate law enforcement interventions and training techniques.

Mental health interventionsIt notable that the sidebar of the TPS web page regarding “mental health issues” includes a link to Alzheimer.ca. This suggests that, at least among some law enforcement, dementia is understood within a mental health framework.

A Toronto Police Service (TPS) procedural information sheet states that in Ontario, the Mental Health Act (MHA) authorizes law enforcement officers to detain an “emotionally disturbed person” (EDP) who is behaving in a disorderly manner, or threatening harm to himself or others, for examination by a physician at a psychiatric facility (TPS, 2008). In practice, the facility is often an emergency room. Due to hospital overcrowding, it is not uncommon for police to spend an entire shift waiting in the emergency room with a Form 1 (Provincial Human Service and Justice Coordinating Committee, 2011).

Under the MHA, Form 1, an application for psychiatric assessment, authorizes the detention and assessment of an EDP for up to 72 hours. The TPS document defines an EDP as “any person who appears to be in a state of crisis or any person who suffers from a mental disorder.” This definition could comprise an individual with dementia having catastrophic responsive behaviours.

Of survey respondents who believe Form 1 is a successful intervention for people with dementia, 63.6 percent reported having been involved in a situation where a person with dementia was detained through a Form 1. In contrast, only 36.4 percent of those who believed Form 1 is a successful intervention reported not having been involved in such a situation. This suggests a possible discrepancy between the understanding of how Form 1 is applied in theory, and how it is applied in practice. Conversely, the discrepancy may be between how the MHA is applied by different individual officers, and in different service areas. This harkens back to the overarching theme of ambiguity and inconsistencies.

Survey respondents expressed a variety of reasons for believing that Form 1 is or is not a successful intervention for people with dementia. Reasons for believing it is a successful intervention included: a lack of other alternatives; the potential to discover an underlying mental health condition; the potential for medical assessment of the person with dementia; the opportunity to “get the ball rolling” toward further community intervention; and ensuring the safety of the person with dementia, as well as his or her family and care partner(s). Respondents who believed Form 1 is not a successful intervention gave the reasons of: law enforcement professionals not having adequate training in how to interact with people with dementia; the potential trauma to the person with dementia, and his or her family and care partner(s), of being forcefully removed from the home; the fact that the person with dementia cannot




rationalize or remember the precipitating incident; the lack of appropriate location to bring the person with dementia to; and the lack of medical assessment provided.

In 2004, the Ontario Police College, Centre for Addiction and Mental Health, and St Joseph’s Health Care in London developed a police training manual entitled “Not Just Another Call... Police Response to People with Mental Illnesses in Ontario: A Practical Guide for the Frontline Officer” (2004). Although the manual does not mention dementia, it does discuss strategies and procedures for dealing with potential manifestations of dementia, such as depression, hallucinations, delusions, and paranoia. It also discusses relevant portions of the Mental Health Act, including Form 1.

One promising mental health intervention is the Mobile Crisis Intervention Team (MCIT). Each MCIT consists of police, whose job is to ensure safety, and possibly apprehend the individual under the MHA, and mental health workers, whose job is to perform a psychiatric assessment on site and choose whether to bring the individual to a hospital or connect them with local community services. Examples of MCITs are the Crisis Outreach and Support Teams (COASTs) operating in Hamilton, Halton, Peel, and Chatham-Kent.

Despite the potential benefits of regarding dementia within a mental health framework, Key Informants reported that much psychiatric infrastructure is inappropriate for people with dementia, having not been designed with the unique needs of people with dementia in mind. For example, there exists much potential for volatile situations in a mental health care facility. Staff are not trained in dementia-care approaches and may not be equipped to handle responsive behaviours such as wandering. However, despite the inappropriateness of some psychiatric infrastructure, incidents involving people with dementia happen too infrequently to justify the cost of reserving a safe bed solely for their use. 44.2 percent of survey respondents reported not knowing of an incident in their service area where police were called to intervene with responsive behaviours. In addition, psychiatric interventions are designed for the rehabilitation of a person with mental health issues, which is not always the right care model for people with dementia.

Other current interventionsBehaviour Supports Ontario (BSO) has recently developed Behaviour Support Services – Mobile Support Teams (BSS-MST) in most Local Health Integration Networks (LIHNs) in the province. The goal of each BSS-MST is to provide support for seniors living with difficult behavioural issues as a result of dementia, mental illness, or addiction. This initiative is presented as an alternative to bringing the senior to the emergency room, which may lead to Alternative Level of Care (ALC) placement. Its viability as an alternative to police involvement has not been evaluated.




The PSW Champions initiative in Champlain LIHN, also funded by BSO, is an example of an intervention designed to deescalate incidents in long-term care before police involvement is required (BSO Quarterly Report, 2013).

Law enforcement training55.8 percent of survey respondents said that their local Society is involved in police training; those who identified their Society as urban were more likely to have been involved in police training than those working in a rural or mixed service area. Of those who were involved, 75 percent reported that training took place every few years. The most common subjects respondents reported covering in police training were dementia basics (90%), wandering and missing incidents (85%), and responsive behaviours (70%). When asked whether they thought anything important was missing from the survey, 37.5 percent of respondents expressed a desire for assistance in the form of a training package from ASO, or advice on how to liaise with local law enforcement.

In developing police training, it is of utmost importance to focus only on what police absolutely must know, remaining within their law enforcement mandate. Training time is extremely tight. One Key Informant reported coming into conflict with a group providing training because the group wished to expand the training to a broader mandate. The standard of training is set by the Ministry of Correctional Services and Community Safety (MCSCS). Priorities are chosen at a provincial level, and training must apply to all police forces in the province.

Some experts have recommended that police form “grey squads,” or groups of officers who have undergone specialized training in geriatric law enforcement. “Police work-particularly as it occurs with older adults-more commonly involves the provision of advice, guidance, and sympathy to those in need than it does crime fighting (Liederbach and Stelle, 2010, p. 59).”

The results of an unpublished pilot study by Dr. Lindy Kilik, supported by Queen’s University, Kingston Police, and Providence Care, suggest that police officers in the field could potentially be trained to detect possible dementia in a subject using a screening assessment called the Short Orientation-Memory-Concentration Test (SOMCT). In the study, officers administering the SOMCT after a 45-60 minute training session assessed dementia symptoms with similar accuracy as a registered nurse with over 15 years experience. The SOMCT takes “a few minutes” to administer. Dr. Kilik’s findings were presented in a webinar with the Dementia Knowledge Exchange in June 2011 to 271 participants. Following the success of the pilot study, Dr. Kilik is currently collecting data from officers using the SOMCT in the field. Data collection should be completed by early 2014.

Nusbaum and others conducted a study in which first responders’ (police and firefighters) awareness of elders at risk of abuse or neglect was assessed before an hour-long educational intervention, and then




at 3 and 6 month intervals (2007). Their findings suggest that the intervention they developed did not result in significant increases in awareness or probability of doing screenings at first point of contact. Proposed reasons for this lack of behavioural change included the length of the intervention, and the fact that the intervention was administered by medical personnel, rather than the first responders’ peers.

On the other hand, Payne and Berg argue that multidisciplinary cross-training may be preferable to single-professional training, as it may lower potential obstacles to collaboration by raising sensitivity to differences in professional values (2003). Burke and others found that educational interventions are more likely to lead to behavioural change when they include elements of active participation (2006, in Nusbaum et al, 2007).

A training program implemented and evaluated by Doty and Caranasos was rated as highly valuable by police officers (1990). The training included an overview of dementia; understanding care partner stressors; coping, communication and behavioural techniques; and resources within the local community. The training also touched upon themes such as cultivating empathy with persons with dementia, differentiating between symptoms of dementia and intoxication or other illness, and working with care partner dynamics. Real, local case studies were used as the basis for officers to role play appropriate and inappropriate responses to persons with dementia. Pre- and post-intervention evaluations suggested a significant increase in knowledge as a result of the training. Key Informants corroborated that police respond better to hands-on training, and Ontario Police College has facilities to do hands-on training with actors in realistic locales.

A potentially useful training intervention called Crisis Intervention Response Training (CIRT) was developed in 2008 by the Durham Regional Police in partnership with the University of Ontario Institute of Technology. It is a web-based training using multimedia tools to guide the trainee through various law enforcement interventions with people with mental health issues, and can be found at http://cirt.uoit.ca/LOs/mainMenu/.

Opportunities moving forward Some jurisdictions have had success with dedicated police officers serving seniors. It may be

prudent to begin to develop relationships with Community Relations Officers moving forward. However, there are not enough specially trained officers to respond to every case; therefore, it would be prudent for all officers to have basic skills in interacting with people with dementia.

Key informants reported success including dementia in mental health/crisis intervention police training (JB&KR; KS). This could lead to partnerships with Centre for Addiction and Mental Health (CAMH), or Canadian Mental Health Association (CMHA) to provide a “foot in the door” to police training.




A report from the Provincial Human Services and Justice Coordinating Committee (PHSJCC) recommended the creation of a memorandum of understanding (MOU) between police and hospitals addressing the concerns of faster triage in hospitals when an individual is “formed,” and ensuring that patients are connected with community services before discharge.

The First Link program connects people recently diagnosed with dementia to services provided by their local Alzheimer Society. It may be possible to find a mechanism to channel people with dementia who have police involvement, to ensuring connection with a physician, to linkage with Alzheimer Society local programs. Each local Society would have to find a way. First Link infrastructure is already in place province-wide; it may be prudent to capitalize on these existing resources and expand the program.

The current project provides an opportunity to bring all stakeholders to the table to find out who is doing what, and how to interpret regulations that are in place. One Key Informant identified that a major hurdle of forming a task force was convincing all stakeholders that there was no interest in finger-pointing, or blaming any particular profession for existing issues. It is important to emphasize that the goal is to improve quality of life for people with dementia. Key Informants described a variety of methods in which different stakeholders interact, such as:

o In New Hampshire, the Incapacitated Adult Fatality Review Committee (IAFRC) meets on a regular basis to examine the positives and negatives of the intervention in a challenging local case, in order to determine best practices in the future. Professionals with expertise in long-term care, emergency medical services, law enforcement, social work, home care, domestic violence, and disability rights make up this committee. A report with their findings is disseminated to stakeholders. A local parallel may be the Ontario Coroner’s annual review of geriatric deaths.

o The Alzheimer’s Association of Southeastern Wisconsin convened a Challenging Behaviours Task Force that met every other month for a year to discuss legal interventions, law enforcement, psychotropic medications, and training. Examining the inner workings of multiple systems provided the Task Force with a better understanding of them.

Questions moving forward1. What would be the goals and underlying principles of a dementia strategy for law enforcement?2. Where else might law enforcement mental health interventions be adapted for use with people

with dementia?3. How often are persons detained under the MHA later found to have dementia?4. What dementia training tools can be adapted for use with police?5. How would the success of an educational intervention for law enforcement be measured?6. When do law enforcement professionals feel it is appropriate for them to be involved?




Responsive behaviours

The Murray Alzheimer Research and Education Program (MAREP) now refers to the responsive behaviours as “personal expressions.” Some behaviours that may occur as a result of dementia may be classified as criminal acts. For example, a person with dementia may undress in public because they are overheated or need to use the toilet; this behaviour may appear to be public indecency. Shoplifting may be suspected when a person with dementia forgets to pay for an item, or leaves a store forgetting that they have an item in their possession (Alzheimer’s Association, 2006).

Because dementia results in the loss of a person’s capacity to cope with stressors, including the behaviours of other residents, research has found incidents of residents lashing out at others due to the other residents’ dementia-related behaviours. Resident to Resident Elder Mistreatment (RREM) is the most common reason for police being called to long-term care settings (Lachs et al, 2007).

When asked what interventions, other than police, they knew people to seek out when feeling unsafe around a person in their life who has dementia, 48.6 percent of survey respondents named family, neighbours, friends or clergy as among the primary supports. 43.2 percent cited a medical professional or dementia professional such as the local CCAC, BSO, COAST, or GEM nurses. 27 percent cited the emergency room, and 13.5 percent said they knew of family members or care partners who would leave the person with dementia alone, despite the safety risk.

Examples of incidents; risk factorsIn a 2010 Winnipeg case, Joseph McLeod, a person with dementia, was arrested after pushing his wife and primary care partner, Rose. Rose maintains that her husband was unable to recognize her at the time. She was injured in the altercation and required stitches. Local police arrested Joseph, and he spent a month in jail separated from his primary care partner, as she was considered a victim of domestic violence (Picard, 2010). Months later, after being moved to a long-term care facility, Joseph shoved another resident, resulting in a fatal head injury. He was brought to a psychiatric facility and charged with manslaughter.

Testifying in the United States Senate, researcher Donna Cohen, an original founder of the Alzheimer’s Association, lists the following antecedent risk factors for homicidal behaviour in persons with dementia:

History of previous violence or "other-directed" behaviors History of alcohol abuse Active paranoia and other psychotic symptoms Psychotic depression Vascular dementia History of catastrophic reactions

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Traits such as low frustration tolerance and aggressivity Military/law enforcement/firefighter history (US Senate 2004, p 51).

The best predictors for violence are previous violence, active paranoia, and psychotic symptoms (U.S. Senate, 2004).

Conflicting interdisciplinary frameworksWhen police have “reasonable grounds” to suspect domestic violence, a charge will be laid against the aggressor. This charge is laid regardless of whether the victim is willing to attend court, or whether a the officer believes a conviction is likely to be made (Toronto Police Service Procedure Information Sheet). The alleged perpetrator in a domestic dispute is removed from the presence of the victim (through arrest) in order to give the victim time and space for legal decisions, safety planning, and finding shelter, without the threat of further violence.

This type of domestic violence policy is a result of feminist lobbying since the early 1960s for recognition of the great risk faced by victims of domestic violence. What was once seen as a private family issue became a criminal offence. Violence or other types of abuse within intimate relationships was looked at as a systemic issue regarding men’s use of power and control (Botrill and Mort, 2003).

The societal context within which person-centred dementia care standards developed is entirely different. Responsive behaviours shown by people with dementia were, in the past, known as “challenging behaviour,” “combativeness,” and other potentially dehumanizing terms. The current terminology came about to frame these behaviours differently. It is known that responsive behaviours become more intense and frequent as a response to something unwanted or upsetting in the environment of the person with dementia. Therefore, by calling behaviours responsive, the focus is shifted to the lived experience of the person with dementia. When behaviours occur, modifying the environment in order to reduce the behaviours is now considered best practice (MAREP et al, 2005).

Some of the interdisciplinary similarities and potential conflicts present when working with these seemingly incompatible frameworks are summarized in the table below:




Domestic Abuse vs. Responsive Behaviours: Conflicting Frameworks

Domestic Abuse Aggressive Responsive Behaviour

SIMILARITIES

Victim’s safety may be at risk Victim’s safety may be at risk

Aggressor may deny behaviourAggressor may deny behaviour (because

they do not remember)Victim tries to excuse behaviour; fears

separation from aggressorVictim tries to excuse behaviour; fears

separation from aggressor

Victim blames self for incident Victim blames self for incident

CONFLICTS

Result of lobbying for rights of victims of violence

Result of lobbying for rights of persons with dementia

“It’s not your fault” (No victim blaming)“What are you doing to cause the

behaviour?”

“There is no excuse for violence”“Any harm is excusable because the

individual with dementia did not know what they were doing”

Focus on wellbeing of victimFocus on wellbeing of person with

dementia

“Nobody deserves violence” (No mention)

“Aggressor should be punished” “Aggressor should be advocated for”

Emphasis on development of safety plan for victim

Emphasis on preventing future incidents by modifying care

Aggressor is culpable for actions Aggressor may not be culpable for actions




It is easy to see how, in a situation where aggression is a symptom of dementia, experts working from different frameworks may not see eye to eye regarding appropriate interventions. In the aforementioned case of Joseph McLeod, for instance, the domestic violence framework would focus on ensuring the safety of his wife, Rose. However, within the dementia care framework, emphasis would first and foremost be on modifying Joseph’s care environment and routine in order to prevent a similar incident in the future. An examination of the relationship history between Joseph and Rose may yield very different interventions.

Interestingly, of the survey respondents who reported knowing of an incident in their service area where someone was harmed by the behaviours of a person with dementia and police were called, 55.6 percent said that the resulting intervention involved safety planning for the person who was harmed. An equal amount reported that the resulting intervention involved a change in the care routine of the person with dementia, or medication, or hospitalization of the individual. This would suggest that in practice, the two theoretical frameworks can coexist, and perhaps even complement one another.

After two local incidents where people with dementia were arrested after physically assaulting their spouses, The Alzheimer Society of Sault Ste. Marie and Algoma met with local police and formed a Community discussion group (Kelly, 2012). Eventually, this came to a stalemate because the local police were unwilling to consider arrest alternatives, such as a twenty-four hour mobile crisis unit, in a situation where a partner is harmed, nor were they interested in learning to use a brief screening tool.

In a discussion paper, Botrill and Mort further examine the conflicts raised by these diverging interdisciplinary frameworks (2003). They note that aggressive responsive behaviours of people with dementia tend to be conceptualized as being symptomatic of disease within a dementia care framework. An analysis of power and control issues, such as would be used within a domestic violence framework, may be lacking. They argue that there exists a danger of care partner rights and safety being overlooked, in the haste to advocate for persons with dementia:

Issues of responsibility and safety can be blinded or ignored within the context of notions of caring for the person with dementia – Who should and can care for older people and what will happen if they do not care? Does it change the assessment and response if the violence/power-and-control issues existed in the relationship before the onset of dementia (p. 6)?

Botrill and Mort also note that the over-65 cohort is less likely to have been affected by the societal shift in consciousness regarding domestic violence that resulted from feminist consciousness-raising (for example what constitutes abuse and that nobody has to tolerate abuse) the way younger persons would (Morgan Disney and Associates, 2000, in Botrill and Mort, 2003). They cite research suggesting that pre-




morbid abusive or violent behaviour in people with dementia is more predictive of aggressive responsive behaviours after disease onset, than is an individual’s degree of cognitive impairment.

One study found premorbid aggression and a “troubled” relationship with the primary care partner to be predictive of aggressive responsive behaviours in people with dementia. Aggression also tended to be predictive of the discontinuation of home care and entry into long-term care (Hamel et al, 1990).

Botrill and Mort suggest that interventions should centre on the subjective experience of the care partner (2003). An Australian study they cite found that 72% percent of care partners continued to assume their role as carers until a time of crisis, usually a threat to their safety (Gilbertson and Bull 1997, in Botrill and Mort, 2003).

Key Informants reported making safety planning part of their proactive, pre-crisis planning. 58.3 percent of survey respondents who reported having been involved in an incident involving police, said that they also did safety planning with the individual who had been harmed.

Opportunities moving forward Meet with OACP and leaders of Alzheimer Societies to discuss alternatives to arresting a person

with dementia when a family member or care partner is at risk. This issue must be dealt with on a provincial level because some police services claim that domestic violence policies prevent them from considering alternatives to an arrest. This raises the potential for great risk to the person with responsive behaviours, because they may be at risk of delirium or another medical emergency.

Utilize assets in the anti-violence-against-women community to teach safety planning for care partners. The non-victim-blaming approach undertaken by anti-violence experts may provide opportunities to change the way we advocate for better care for people with dementia. It was recommended by a Key Informant that domestic violence advocacy groups be involved in this process from the beginning, in order to prevent ending up in conflict with them. Domestic violence protocols were developed for use with abusers with “full mental capacity,” and were never intended to punish those whose behaviours are caused by illness. The Ontario Women’s Directorate and the Assaulted Women’s Helpline may be good places to start.

Seneca College partnered with police to create a public service announcement (video) on domestic violence. The budget was reasonable because the PSA was created as part of the students’ course work. A similar partnership may be possible.

Questions moving forward1. How do care partners, employees and family members experience aggression or violence from

people with dementia?2. “How much of that which is currently identified as a behaviour or symptom of dementia is

actually domestic violence that predates the onset of disease (Botrill and Mort, 2003, p 21)?”




3. How might it domestic violence protocol be enforced when the alleged offender is dependent on the victim?

4. How does one reconcile the person with dementia as the agent of their own life, with not seeing them as responsible for violence or abuse? How is this related to the concept of “vulnerability”?

5. What constitutes humane/person-centred treatment of perpetrators with dementia?6. At what point in their cognitive decline is a person with dementia no longer responsible for their

actions?7. What intervention(s), police or otherwise, do care partners seek at times of crisis? 8. Can police ensure safety of the victim without arresting the aggressor?9. To what degree is the need for behavioural geriatric units unmet?10. If an aggressor with dementia is brought to hospital for emergency assessment, how might they

be prevented from ALC placement?11. Can certain aggressors (for example, with dementia) be exempt from domestic violence protocol

without diminishing the gains of the feminist/domestic violence framework?




Wandering and missing incidents

As a result of changes in the brain caused by dementia, six of ten will go missing at some point. When someone with dementia goes missing, their changes of returning home safely reduce drastically within 24 hours (Alzheimer’s Association, 2006). Thus it is important to treat search as an emergency. A number of efforts are currently underway to assist law enforcement professionals in searching for persons with dementia who go missing.

Search and rescue programsBoth the Alzheimer Society of Canada and the Alzheimer’s Association in the United States run programs that assist search and rescue personnel when a person with dementia goes missing. Canada’s program is now known as MedicAlert Safely Home, and in the U.S., MedicAlert + Safe Return runs nationwide. Both programs make use of the MedicAlert database. When a missing registrant is located by law enforcement or a civilian, MedicAlert helps to notify family members and reunite them (Lachenmayr et al, 2000).

The Alzheimer Society of Peel, using funding received from their LIHN, opened a respite facility called Nora’s House in 2005. A person found wandering, who has been assessed by police as potentially having dementia, would be brought to Nora’s House for further assessment by staff until his or her primary care partner is located. Alzheimer Society Peel and Peel Regional Police are in the process of developing an online communication tool to facilitate this process.

Tracking devicesProject Lifesaver, currently used by Ontario Provincial Police and York Regional Police, uses a $300 wristband embedded with a radio signal to locate at-risk persons who have gone missing (for example, people with dementia, autism, Down’s syndrome, or traumatic brain injury). The rationale for the technology is that a radio signal requires less battery power than GPS, and so needs to be changed only monthly for a fee of $10 (Agrell, 2001). GPS also has trouble tracking people who are indoors or not in an upright position. Volunteers check in on Project Lifesaver clients monthly when their wristband battery is changed. The FBI Law Enforcement Bulletin claims that “in over 1,800 searches, no serious injuries or deaths have been reported and recovery times average less than 30 minutes (Bryant, 2010).” SafetyNet in the United States also uses radio technology to locate missing at-risk persons. Their service costs $99 to enrol and $30 monthly (Moran, 2011).

Project S.O.F.T. (Satellite Option Finding Technology) is a pilot project currently underway in major municipalities in Nova Scotia. It involves the use of GPS bracelets the size of a large watch to track wandering seniors. Funding for this project is set to end in February 2013, at which point it will be evaluated (Tucker, 2012).

Wandering and missing incidentsPage 16 of 21 Jan 2013



Opportunities moving forward Maintain relationships with stakeholders at Ontario Police College and the Ontario Association

of Chiefs of Police, as well as other high-ranking law enforcement officials, about the current “wandering prevention” program.

Questions moving forward1. How much training do law enforcement officers require in search and rescue of people with

dementia?2. What are police officers’ experiences with Safely Home and MedicAlert + Safe Return?3. What are some of the benefits and drawbacks of tracking devices for people at risk of going

missing?4. For what reasons might a person with dementia or a primary care partner choose not to register

with a program like Safely Home or MedicAlert + Safe Return? (For example, are the related costs prohibitive for people with low incomes?)

Wandering and missing incidentsPage 17 of 21 Jan 2013



Driving

In Ontario, it is required for drivers to renew their licence at the age of 80. The renewal process takes place every two years, and includes a vision test, a group education session with other seniors, and a written or verbal, untimed multiple-choice test. If a participant has trouble following the group discussion, or has recent demerit points on their driving record, a driving counsellor may choose to have the person undergo a road test. However, nearly 37 000 Ontario motorists with potential dementia (calculated from local prevalence rates) are under the age of 80; moreover, dementia in motorists over the age of 80 may not be detected, as the licence renewal process is not designed to detect symptoms of dementia (Hopkins et al, 2004).

Healthy drivingIn one study, law enforcement officers interviewed were more likely than other stakeholders to support immediate licence revocation upon diagnosis of dementia (Perkinson et al, 2005). The researchers recommended educational intervention to increase awareness of dementia progression among law enforcement officers.

Conditional or restricted licensing (for example, requiring a “co-pilot”, or banning night driving and highway driving) has been suggested as one way to assist seniors with and without dementia to maintain driving mobility as long as possible (Canadian Council of Motor Transport Administrators, 2007). There is some evidence that restricted licensing does reduce the incidence of crashes among motorists with medical impairments (Marshall et al, 2002).

Evaluation methodologyThe majority of survey respondents who reported discussing driving with clients reported that they would advise someone with dementia who had concerns about their driving to speak with a doctor (82.6%). In Ontario, as well as most other Canadian provinces, a physician is required to report to the Ministry of Transportation if they believe a patient is unsafe to drive (Rapoport et al, 2007). However, there is still much disagreement in the literature regarding the best way to evaluate when a person with dementia is no longer safe to drive. Practices vary across North American and there is currently no “gold standard” evaluation practice in use (Korner-Bitensky et al, 2006, in Carr and Ott, 2010; Ott et al 2005). This may explain why, in one study, 45.8% of physicians surveyed reported not having confidence in their ability to assess driving ability in their patients, and 88.6% believed that “education about evaluating fitness to drive would be beneficial (Jang et al, 2007, p. 534).”

The Canadian Driving Research Initiative for Vehicular Safety in the Elderly (CanDRIVE) recommends that motorists with dementia have their driving ability evaluated every six months. Other research suggests that a full neuropsychological test every six months would be the most effective way to evaluate driving-related abilities in people with dementia (Adler et al, 2005; Carr and Ott, 2010).

DrivingPage 18 of 21 Jan 2013



A possible screening tool for physicians, known as the Screen for the Identification of Cognitively Impaired Medically At-Risk Drivers, A Modification of the DemTect (SIMARD MD) was developed at the University of Alberta in 2010. Since then the SIMARD MD has been actively promoted by its developers; however, analysis from CanDRIVE researchers suggests that the test has low validity, producing an unacceptable percentage of false positives and false negatives (Hogan & Bédard, 2011).

Key Informants and survey respondents reported that DriveABLE testing is available in their service area; however, it was characterized as being prohibitively expensive for many people at risk of losing their licence. It was reported that some people who dispute their doctor’s report simply cannot afford the test to have their license reinstated.

The Ministry of Transportation (MTO) has taken an interest in the results of the study led by Dr Lindy Kilik, regarding the SOMCT test being used by police in the field. SOMCT scores would provide officers with an objective report if a person with dementia is found driving. This would reduce the challenge of the officer to needing to articulate why they are reporting a driver to the MTO.

Discussing drivingMany Key Informants characterized discussions about driving as highly emotional, and among the most stressful parts of working with people with dementia. The loss of driving ability was reported to be one of the first and most traumatic losses of a dementia diagnosis. At times, the revocation of the person’s license comes in the same appointment as he or she is diagnosed with dementia; this was described as “like being slapped in the face twice.” Of respondents to the survey of local Societies, 86.7 percent reported a client’s fear of losing their independence as an issue. Responses to open-ended questions made mention of other challenges encountered when discussing driving with clients, such as the family or care partner(s) being concerned about a possible negative response to the suggestion that the person with dementia may not be safe to drive, and the role of the physician in driving assessment.

Informants talked about the stress put on the clinical relationship between a person with dementia and his or her doctor caused by the doctor’s duty to report. Some Key Informants found that disclosing the possibility of license revocation goes better if rapport has been built in advance. Some people want to be warned in advance that their license may be revoked; others may avoid seeing a doctor, or decline consent to be assessed for dementia, for fear of having it revoked.

Although a dementia diagnosis is not necessarily a cause for immediate driving cessation, drivers with dementia show trends toward “more at-fault crashes, crashes with injuries, and crashes in which the officer on the scene cited failure to yield (Carr et al, 2000).” Key Informants reported that people with dementia may have small driving incidents that bring them to the attention of law enforcement, before a major incident. However, an individual officer may not feel that the incident is sufficient to require a charge. They let the person off with a warning, which may be forgotten. One informant reported an




occasional strategy of using police authority to convince a person whose license has been revoked to cease driving; for example, sending the officer over to discuss it with person and their family.

Ethical considerationsThe conflict between the independence and well-being of people with dementia, and their safety and that of other motorists and pedestrians, produces an ethical dilemma. Research suggests that driving cessation in elderly persons may lead to social isolation, depression, and reduction of out-of-home activities including medical appointments (Freeman et al, 2006). Elders who stop driving may opt for withdrawal from out-of-home activities rather than dependence and perceived burden on another motorist (Taylor & Tripodes, 2001; Canadian Council of Motor Transport Administrators, 2007). One study found a positive correlation between being a non-driver and earlier entrance into long-term care (Freeman et al, 2006).

For these reasons, a study found drivers with dementia unlikely to self-regulate driving cessation; only 27% of study participants opted for voluntary driving cessation before the occurrence of a crash (Friedland et al, 1988). Another study found that 80% of study participants continued to drive for up to three years following a crash (Cooper et al 1993, in Breen et al, 2007). In another study, seniors without dementia reported that only a crash or near-crash would cause them to voluntarily stop driving (Rudman et al, 2006).

Transportation alternativesIndividuals living in areas with low public transit access, such as rural and northern areas, as well as some urban areas, are left without transportation options upon cessation of driving (Canadian Council of Motor Transport Administrators, 2007). In small or rural areas, driving might be necessary in order to pick up one’s mail at the post office. Of survey respondents who described their service area as rural, 81.8 percent reported a lack of transportation alternatives as a major issue, compared to 68.9 percent of all respondents. Key Informants reported that some transport alternatives are only for medical appointments. As far as social and leisure activities, an individual whose license has been revoked as very few options, especially in a rural setting.

Transportation options that non-drivers are able to access, such as WheelTrans in Toronto, or volunteer driving services, lack spontaneity and must be planned in advance. This leads to a feeling of dependence. Key Informants also reported WheelTrans booking difficulties. One informant reported being put on hold for up to an hour when booking WheelTrans for clients. The alternative, an online booking system, was reported as being difficult for seniors to use. If a WheelTrans user misses his or her pick-up time, for example because a doctor is behind schedule, he or she may not have other means of returning home.




Opportunities moving forward The upcoming full report from Dr Samir Sinha may address a possible solution to the stress of

license revocation on the doctor-patient relationship. If all individuals 80 and over were to require medical certification to drive, this would relieve the pressure on both doctors and care partners to place themselves in opposition to a person with dementia or any other impairment that may make them unsafe to drive. Thus instead of the revocation seeming as sudden and punitive, it becomes part of a healthcare check-up. Additionally, this approach may lead to more diagnoses of dementia, as well as other medical issues, at an earlier point.

One Key Informant put forward the idea of a “pre-charge” for dangerous driving. When someone has a minor incident, instead of letting them off with a warning, which they may forget, police would inform them have done something in conflict with the law, and require a follow-up with a crisis team and physician within three days. If the individual does not follow up, the police will initiate a follow up.

The At-Risk Driver Program began with Alzheimer Society Durham Region and has since been adopted by other local Alzheimer Societies. The program registers an individual with dementia whose license has been revoked into the CPIC database. If the person continues driving, and is stopped by police, the contact information of a family member or care partner is available in the CPIC database. This care partner is responsible for the car. The local Alzheimer Society provides ongoing support, information, and referrals. Few people are registered for this program and it is not heavily publicized.

Questions moving forward1. Is it possible for testing of motorists 80 and over to reveal signs of cognitive impairment? If so,

can individuals who show these signs be referred for testing?2. What interventions are in place if a motorist with dementia or possible dementia is stopped by

police? Can they be referred for testing, for example through the First Link program, or a memory clinic?

3. What views do local law enforcement hold regarding motorists with dementia?


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