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FOR IMMEDIATE RELEASE | January 13, 2009
CAREGIVERS OFTEN FEEL THREATENED BY BEHAVIOURS OF
PERSON
WITH ALZHEIMER’S DISEASE
Alzheimer’s Foundation for Caregiving urges families to seek support
TORONTO, Ontario – January 13, 2009 – According to a new survey conducted for the Alzheimer's Foundation for Caregiving in Canada (AFCC) among caregivers of people with Alzheimer’s disease, behavioural symptoms such as agitation and aggression are common in their loved ones and take a significant toll on primary caregivers, especially those who feel scared or threatened by these behaviours.
"There is no doubt that family caregivers face enormous challenges and issues regarding short-term and long-term care needs when behavioural symptoms appear. Reaching out for help, taking advantage of support services and exploring possible interventions can make a world of difference," said Taras Rohatyn, AFCC’s president.
In the survey, the majority of caregivers had observed agitation and more than a third had observed aggression among the person they were caring for with Alzheimer’s disease. Caregivers also reported a high incidence of disorientation and mood swings. In addition, almost one quarter (23 per cent) of caregivers had felt scared or threatened by the individual’s behaviours.
While almost all caregivers said they were open about the fact that someone close to them has Alzheimer’s disease, they were least likely to inform neighbors, work colleagues and employers. And while more than two-thirds of caregivers were comfortable discussing symptoms like disorientation (71 per cent) and mood swings (69 per cent) with people outside their immediate family, the comfort level fell significantly for other symptoms, including aggression (57 per cent)—indicating that being candid about some symptoms of Alzheimer’s disease causes more discomfort than discussing other ones.
According to Dr. Nathan Herrmann, head of the Division of Geriatric Psychiatry at Sunnybrook Health Sciences Centre in Toronto, "Behaviours such as agitation and aggression are common as Alzheimer’s disease progresses, and caregivers seem somewhat reluctant to talk about these behaviours. This might be because they feel embarrassed by these behaviours for the patient, or because they may feel guilty that their caregiving has elicited these behaviours. Caregivers concerned about behaviours such as agitation and aggression should open up and speak to their doctors because drug and non-drug treatment options are available."
While research indicates that antipsychotic drugs are widely prescribed to treat behavioural symptoms related to Alzheimer’s disease, there is evidence that these drugs are associated with increased mortality rates in elderly individuals with dementia 1,2.
Caregivers need more support in dealing with agitation and aggression
In general, caregivers have experienced the following physical changes since they began taking care of someone with Alzheimer’s disease: fatigue (47 per cent), difficulty sleeping (36 percent), headaches (23 per cent), back pain (21 per cent), weight gain (19 per cent) and worsening of existing conditions (15 per cent).
When it comes to handling agitated or aggressive behaviour, these caregivers indicate they could use more help: more than half of caregivers would like more support from outside their family and just under half would like more support from their family. And nearly six in ten (58 per cent) would consider residential care for the person with Alzheimer’s disease if the person’s aggression or agitation became too difficult to handle.
In addition, with problems of aggression and agitation, those caregivers who have felt threatened or scared are more likely to have experienced a wide range of emotions, including sadness, anxiety and being short-tempered. These respondents in particular expressed a desire for more assistance and were even more likely than respondents in general to consider placing loved ones in residential care.
Surprisingly, 40 per cent of respondents report that the person they are caring for with Alzheimer’s disease is not taking any medication. And more than 50 per cent said they had not asked their healthcare provider about other medications available to treat agitation and aggression.
The survey also demonstrated that caregivers in Quebec are the least likely in Canada to be extremely open about the fact that someone close to them as Alzheimer’s disease. "Stigma, denial, embarrassment and other issues often restrain caregivers," said AFCC’s Rohatyn. "We encourage these caregivers to reach out to organizations like the AFCC, which can be invaluable resources for dealing with the challenging symptoms of Alzheimer’s disease."
Survey methodology
Harris/Decima conducted an online survey of 509 caregivers between October 27 and November 11, 2008. The respondents included 250 primary caregivers for someone with Alzheimer’s disease and 259 family members or close friends involved in the ongoing care of someone with Alzheimer’s disease. The data was weighted by gender, age and region to match the proportion of the Canadian population.
About the Alzheimer's Foundation for Caregiving in Canada
The Alzheimer's Foundation for Caregiving in Canada (AFCC) is a national not-for profit charity headquartered in Richmond Hill, Ontario and provides programs to meet the educational, emotional, practical and social needs of its caregiver member organization who service families affected by Alzheimer's disease and related illnesses. For information, call (toll-free) 1-877-321-2594 or visit www.alzfdn.ca.
FOR MORE INFORMATION PLEASE CONTACT:
Robert Appleton, AFCC
1-877-321-2594
afcc-pr@alzfdn.ca
Pamela Arora
NATIONAL Public Relations
416-586-0180
parora@national.ca
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1 Gill S. et al., Annals of Internal Medicine 2007;146:775-787
2 Health Canada safety warning, accessed at http://www.hc-sc.gc.ca/ahc-asc/media/advisories-avis/_2005/2005_63_e.html
