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20 Eglinton Ave. West, Suite 1600, Toronto, Ontario M4R 1K8 • 416- 967-5900 or 1-800-879-4226 • Fax 416-322-6656 [email protected] • www.alzheimerontario.org

“Turning a private trouble into a public issue”¹

An analysis of people diagnosed with Alzheimer’s disease or

dementia in home care and their caregivers

October 29, 2010

Delia Sinclair, BSW; Andrew P. Costa, PhD (C); David Harvey, MA;

and Phillip Caffery, PhD.

Turning a private trouble into a public issue October 2010

Alzheimer Society of Ontario

“Turning a private trouble into a public issue”1

Introduction

People with Alzheimer’s disease and related dementia (ADRD) are a prevalent and

important population in the health care system. In the Ontario home care sector,

approximately 20% of clients have a diagnosis of ADRD. These home care clients are more

likely to exhibit behaviours that are classified as disruptive, aggressive, or responsive

compared to other home care clients. In fact, approximately 30% of home care clients with

a diagnosis of ADRD have some behavioural symptoms.

This report categorizes home care clients in Ontario with ADRD by their behavioural status

and describes them according to their strengths, preferences, and needs.

Different constructs are used in the research literature and in clinical practice to describe

behavioural symptoms (Perlman & Hides, 2008; Patel & Hope, 1992; Cohen-Mansfield, Marx

& Rosenthal, 1989). Here, behavioural status was categorized across three rudimentary

levels: ‘Serious’, ‘Moderate’, and ‘No Behaviours’. ‘Serious behaviours’ are defined as

occurrences of verbally abusive behaviour, physically abusive behaviour, and/or socially

inappropriate/disruptive behaviour. ‘Moderate behaviours’ are defined as occurrences of

wandering and/or resisting care. ‘No behaviours’ are defined as the absence of the

following: verbally abusive behaviour, physically abusive behaviour, socially

inappropriate/disruptive behaviour, occurrences of wandering, or resisting care.

This report was derived from a January 2003 – September 2008 census level sample of

persons with a diagnosis of Alzheimer’s/Dementia from the Ontario RAI Home Care (HC)

database2. Data from 89,343 persons with ADRD were analyzed. All analyses are presented

as proportions of the categorized ADRD home care population unless otherwise indicated.

1 Pitkeathley J. A View of the Caregiver Movement: Today and Tomorrow; Available from:

http://www.aarpinternational.org/usr_attach/Pitkeathley-KeynoteSpeech.pdf 2 The authors gratefully acknowledge John P. Hirdes PhD (University of Waterloo) for the use of the

Ontario RAI HC database for this report.



Demographic information

While the age range is broad, the majority of persons with ADRD in home care are 75

years of age or older. This indicates that within the home care population, most people

with a diagnosis of ADRD are in the later stages of their lifespan. Thirty-three percent of

the population experience behavioural symptoms.

Figure 1 Population

Figure 2 Demographic information: Age

0

10000

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Serious Behaviours Moderate Behaviours No Behaviours

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under 55 55 to 64 65 to 74 75 to 84 85+

Age Group

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Serious Behaviours

Moderate Behaviours

No Behaviours



In the general home care population, females are more prevalent than males. The same is

true for home care clients affected by ADRD. Though females are more common across all

behaviour categories, males are more likely to exhibit serious behaviours. It remains

unclear whether men have an increased propensity to exhibit serious behaviours or

whether serious behaviours exhibited by men are more likely to be reported or recorded.

Figure 3 Demographic information: Gender

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Female Male

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Serious Behaviours

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No Behaviours



Caregiver status and informal care

Just over half of people in every behavioural category lived with their primary caregiver.

Approximately 40% of people with serious behaviours had a primary caregiver that was

also their spouse. This is slightly higher than those with moderate or no behaviours. This

difference may reflect the increased number of males in the serious behaviours category

combined with known patterns of cohabitation among older males (Ontario Home Care

Database). In contrast, 56% of people exhibiting no behaviours, and 53% of people

exhibiting moderate behaviours had a caregiver that was a child or child-in-law. Again,

this difference might be explained by the increased number of females in the moderate or

no behaviours categories.

Figure 4 Primary caregiver status

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Lives with client Is a spouse Is a child/child-in-law

Primary caregiver

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Serious Behaviours

Moderate Behaviours

No Behaviours



Informal care time is defined as care provided by unpaid caregivers. Approximately 80%

of care provided to people living with ADRD in the community is provided by informal

caregivers (Guberman, 1999). Within the population studied, people with serious

behaviours receive the greatest amount of informal care time (average of 36.7 hours per

week).

This analysis shows that the average informal care hours provided for a loved one with

serious behaviour symptoms is roughly equivalent to a full-time job.

Though some caregivers are providing care on a full-time basis, the literature suggests they

are receiving little financial support and modest flexible and self-directed community

support (Public Health Agency of Canada, 2006; Special Senate Committee on Aging,

2009). At the same time, their efforts save the health care system dollars, as caring for a

person in the community is more affordable to the health system then in an institution

(Hollander, Guiping & Chappell, 2009; Tanmer, Croxford & Coyte, 2001).

Figure 5 Informal care

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Caregivers of people exhibiting serious behaviours were more likely to express feelings of

distress and feel they were unable to continue than caregivers of people with moderate or

no behaviours. These findings could be linked to the stress an informal caregiver may

experience when caring for someone with ‘serious’ behaviours. The majority of informal

caregivers of persons exhibiting serious or moderate behaviours indicated that their loved

one would be better off elsewhere. This suggests that informal caregivers of people living

in the community with ADRD may not have adequate access to support. Likewise, these

findings suggest that many people in the community with a diagnosis of ADRD are at risk

of institutionalization (Special Senate Committee on Aging, 2009; Ontario Government

MOHLTC, 2009).

Figure 6 Caregiver distress

0

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Unable to continue Expresses feelings of distress, etc

Client and/or Caregiver thinks client would be better off elsewhere

Per

cen

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Serious Behaviours

Moderate Behaviours

No Behaviours



Clinical information/communication and sensory status

Across all indicators of cognitive status available in the RAI Home Care assessment, persons

with ADRD and serious behaviours were far more likely to have increased cognitive

decline, including impaired short-term memory and delirium, compared to those without

behavioural symptoms. Notably, people exhibiting serious or moderate behaviours were

more likely to have worsening decision-making skills than those without behavioural

symptoms.

Figure 7 Impaired short term memory and decision-making

05

101520253035404550556065707580859095

100

Impaired Short Term Memory

Dependent for Decision-making

Worsening Decision-making (last 90 days)

Per

cen

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Serious Behaviours

Moderate Behaviours

No Behaviours



While delirium is a temporary condition, it is important that people affected receive timely

and appropriate medical care. Without appropriate care their risk for institutionalisation

increases (Alzheimer Disease International, 2009). Those with serious and moderate

behaviours have an increased number of indicators for delirium.

Figure 8 Indicators of delirium

As the severity of behaviours increases, the data show that persons with behavioural

symptoms have more difficulty making themselves understood by others, as well as

increased difficulty understanding others. A diminished ability of communicate thoughts

and feelings may explain some behavioural symptoms for those with ADRD.

Figure 9 Communication

0

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Indicators of Delirium (7 Days) Indicators of Delirium (90 Days)

Per

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Serious Behaviours

Moderate Behaviours

No Behaviours

0

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Difficulty Making Self Understood Difficulty Understanding Others

Communication

Per

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Serious Behaviorus

Moderate Behaviours

No Behaviours



Mood and behavioural status

People with serious behaviours exhibited an increased rate of withdrawal from activities

that interest them and a reduction in social interaction when compared to the rate of

people exhibiting no behaviours. This could be due to a number of reasons, including:

stigma about the disease, decreased ability to engage in conversation, inability to find

appropriate transportation, changes in one’s self-confidence, or inability to coordinate

social interaction.

Figure 10 Social interaction

0

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Withdrawal from Activites of Interest

Reduced Social Interaction

Per

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Serious Behaviours

Moderate Behaviours

No Behaviours



The majority of people without behavioural symptoms rated ‘0’ on the Depression Rating

Scale (DRS) (Burrows, Morris, Simon, Hirdes & Phillips, 2000). Overall, people exhibiting

serious behaviours are three times more likely to rate ‘3’ or more on the DRS – an

indication that those with ADRD and serious behavioural symptoms may be at higher risk

for depression compared to those with moderate or no behaviours. However, it must be

noted that many factors can contribute to depression and many are not directly related to

ADRD.

Figure 11 Mood status

0

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0 1 to 2 3+

Depression Rating Scale

Per

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Serious Behaviours

Moderate Behaviours

No Behaviours



Physical functioning

In all three categories, the majority of people with ADRD had difficulty with the following

activities of daily living (ADL): transferring from bed to other location, dressing upper and

lower body, eating, using the toilet, bathing, and managing personal hygiene. While the

majority experienced these challenges, in general, people with no behavioural symptoms

were less likely to show difficulty in dressing, eating, toileting and personal hygiene

compared to those with behaviours.

Figure 12 Activities of daily living

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Transfer Dressing Body Eating Toilet Personal Hygeine

Bathing

ADL Performance (Dependent)

Per

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Health conditions

Reducing the risk of falls is imperative to maintaining independence as people age (Special

Senate Committee on Aging, 2009; Senior’s Health in Ontario, 2006). Risk of falls is shown

to be high in all persons with a diagnosis of ADRD. Overall, 40% report that they had

experienced one or more falls in the last 90 days - approximately 10% higher than the

general home care population (Ontario Home Care Database). In addition, across all

behavioural categories the majority reported having an unsteady gait and approximately

one-third limited going outdoors due to a fear of falling. This restriction limits potential

independence and social interaction. With better community supports it is possible that

persons with ADRD in the community would have improved independence (Ontario Health

Quality Council, 2009).

Figure 13 Falls

Figure 14 Potential risk of falling

0

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1 2 3+

Per

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Number of falls in the last 90 days

Serious Behvaiours

Moderate Behaviours

No Behvaiours

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Unsteady Gait Limits going outdoors due to fear of falling

Per

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Serious Behvaiours

Moderate Behaviours

No Behvaiours



The majority of the persons with ADRD were affected by more than one condition.

However, the most common co-morbidities were Hypertension, Arthritis, Stroke,

Osteoporosis, Diabetes, and Cataract. The existence of co-morbidities draws attention to

the importance of providing primary care that responds to the needs created by co-morbid

conditions. Service providers need to be skilled in treating co-morbidities and

understanding how these may interact and influence the person’s experience of dementia.

Figure 15 Selected disease diagnosis: Co-morbidities

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Hypertension Arthritis Stroke Diabetes Osteoporosis Cataract

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Resource use

Overall, 36% of people with a diagnosis of ADRD were hospitalized and 18% visited the

Emergency Department (ED) in the preceding 90 days. Though this proportion is similar to

the general home care population (Ontario Home Care Database), any efforts to reduce

hospitalizations and ED visits has the potential to improve well-being and relieve health

system strain.

Figure 16 Hospitalizations and emergency department visits

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1 to 2 3+ 1 to 2 3+

Hospitalization in the last 90 days ED visits in the last 90 days

Per

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Health care resource use data indicate that persons with ADRD use a variety of services

across the care continuum. The three highest rates of usage were found for physician or

clinical visits, physical therapy, and occupational therapy. While people with serious

behaviours accessed respite care the most, the generally low rate could be an indication

that there may not be enough respite available, its availability may not be well known,

there may be limitations to accessing it, or the services available may not be flexible

enough to meet the needs of people living with dementia.

Figure 17 Resource use

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Physician or clinical visit

Physical Therapy

Occupational Therapy

Medical Alert Bracelet

Number of Medications

Respite Care

Per

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Formal care time

Home care clients with a diagnosis of ADRD access a variety of formal care services from

different care specialities. For example, persons with ADRD accessed the following types

of services: home health aides, nursing, homemaking services, meal preparation, volunteer

services, physical therapy, occupational therapy, speech therapy, day care or day hospital

services, and social work visits in the home. Of these services, the most prevalent services

accessed were home health aides, homemaking or meal preparation services.

Figure 18 Formal care (last 7 days)

0

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Home Health Aides Homemaking Services Meals

Per

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Serious Behaviours

Moderate Behaviours

No Behaviours



Summary conclusions:

Home care clients with a diagnosis of Alzheimer’s disease or a related dementia are a

distinct and prevalent population in the Ontario home care sector. Those with behavioural

symptoms are more likely to be living with a spouse, have increased cognitive decline,

experience more social withdrawal, and have more difficulty communicating compared to

those with no behavioural symptoms. Caregivers of persons with behavioural symptoms

experience higher levels of distress and are more likely to feel that their loved one would

be better off elsewhere.

This descriptive report suggests that programs and policies to alleviate caregiver burden

and increase social continuity and cohesion would be of benefit for persons with ADRD

who may be exhibiting or are at risk of exhibiting behavioural symptoms.



References

Alzheimer’s Disease International. (2009). World Alzheimer Report: Executive summary.

Burrows, A. B., Morris, J. N., Simon, S. E., Hirdes, J. P., & Phillips, C. (2000). Development of

a Minimum Data Set-based depression rating scale for use in nursing homes. Age &

Ageing, 29(2), 165-72.

Cohen-Mansfield J, Marx MS, Rosenthal AS. A description of agitation in a nursing home. J

Gerontol A Biol Sci Med Sci 1989;44:M77–M84.

Guberman, N. (1999). Caregiver and caregiving: New trends and their implications on

policy, Final Report. Health Canada: Ottawa.

Hollander, M. J, Guiping, L., & Chappell, N. L. (2009). Who cares and how much?: The

imputed economic contribution to the Canadian healthcare system of middle-aged

and older unpaid caregivers providing care to the elderly. Healthcare Quarterly,

12(2), 42- 49.

Ontario Government MOHLTC. (2009). Caring about Caregivers: Long rage scenario

planning supporting caregiving into 2033.

Ontario Health Quality Council. (2009). Long-term care in Ontario: A report on quality.

Patel, V & Hope, R.A. (1992). A rating scale for aggressive behavior in the elderly: the

RAGE. Psychol Med, 22, 211–221.

Perlman, C. M., & Hirdes, J. P. (2008). The aggressive behavior scale: A new scale to

measure aggression based on the minimum data set. J Am Geriatr Soc, 56(12), 2298-

303.

Public Health Agency of Canada (2006). Discussion Paper: Possibilities for Federal

Government Action on Alzheimer Disease and Related Dementias. Prepared by Penny

MacCourt, PhD.

Seniors’ Health in Ontario – Background paper for Elder Health Think Tank, 2006.

Special Senate Committee on Aging Final Report (2009). Canada’s aging population:

Seizing the opportunity.

Tanmer, J., Croxford, R., & Coyte, P. (2001). Dementia in Ontario: Prevalence and Health

Services Utilization. Canadian Journal on Aging, 22(4), 369-379.



For More Information:

20 Eglinton Ave. West, Suite 1600, Toronto, Ontario M4R 1K8 • 416- 967-5900 or 1-800-879-4226 • Fax 416-322-6656 [email protected] • www.alzheimerontario.org

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