Critical Diagnosis of Alzheimer's Delayed for Years by Stigma and Denial

National survey finds longest delays when fear manifested in caregiver 

March 21, 2006– The stigma and denial of the developing symptoms of Alzheimer's disease delays treatment for more than two years (28.7 months) on average. But, when this fear is manifested in the caregiver, delay of diagnosis is even more severe, averaging 6 years (71.4 months). These are findings in a new survey from the Alzheimer's Foundation of America.

When it is the people with Alzheimer's disease that are concerned about stigma, a diagnosis of Alzheimer's disease occurred on average 3.5 years (40.1 months) after symptoms appear.

In most cases, the length of time between first symptoms and a diagnosis can be measured in terms of years, not months.

"Any delay in diagnosis is a setback for people with Alzheimer's disease and their caregivers -- and a delay of two years or more is a serious and unnecessary setback," said Eric J. Hall, chief executive officer of the Alzheimer's Foundation of America.

A typical patient experiences symptoms for just over 2 years (26.1 months) and visits several doctors (2.3 on average) before receiving a diagnosis of Alzheimer’s disease.

• Over half (61%) of caregivers indicated that they are at least partly responsible for the delay between the onset of symptoms and the actual diagnosis. There is not a statistically significant difference between the likelihood of males (66%) and females (61%) to accept part of the responsibility.

The most-commonly cited reasons for a delay are cited by both genders and typically cause a delay of 2 ½ years or more.

• Not knowing enough about the disease was a reason for delay for a substantial minority of caregivers (40%). Caregivers who cited this reason indicated a delay of 2 ½ years (29.6 months) on average. Males (41%) and females (40%) are equally likely to cite this reason.
• Their loved one’s resistance to visiting the doctor was a reason for another substantial group (38%). Caregivers who cited this as a reason reported a delay of 2 ¾ years (32.7 months) on average. This reason is cited significantly more often by caregivers for a parent (48%) than caregivers for a spouse (23%). There is not a statistically significant difference in the likelihood of males (35%) and females (40%) to cite this reason.

Several other secondary reasons may be cited more often by one gender and typically cause a delay ranging from 1 ½ years to 6 years.

The longest delay of all (roughly 6 years) is associated with the caregiver’s own concern about the stigma of an Alzheimer’s disease diagnosis. Among the relative few who mention this barrier, it appears to have a powerful effect on how long the patient waits to receive a diagnosis.

• A subset of caregivers (19%) did not want to face the possibility that something could be wrong. This reason is cited significantly more often by caregivers for a spouse (33%) than caregivers for a parent (12%). Female caregivers (23%) are significantly more likely than males (11%) to say that this was a barrier. On average, caregivers who mentioned this barrier reported a delay of 1 ½ years (18.2 months).
• A small minority of caregivers (11%) say that the patient was concerned about the stigma of an Alzheimer’s diagnosis. Male caregivers (17%) are significantly more likely than females (8%) to say that the patient’s own concern about a stigma was an obstacle to diagnosis. On average, respondents who mentioned this barrier reported a delay of approximately 3 ½ years (40.1 months).
• For a few caregivers (9%), concern about healthcare costs delayed the diagnosis. Male caregivers (18%) are significantly more likely than females (4%) to express this concern. This is associated with a delay of about 1 ½ years on average (19.4 months).
• Those relative few who indicated that their own concern about a stigma was a reason for the delay (5%) reported a delay of roughly 6 years (71.4 months) on average. Males (9%) were significantly more likely than females (3%) to indicate that their own concern about a stigma was the primary reason for the delay.

Overall, slightly more than half of caregivers mention fear of stigma and/or denial as reasons for a delayed diagnosis, including their own fear of stigma, the patient’s fear of stigma, the patient not wanting to see the doctor, and/or the caregiver not wanting to think something could be wrong with their loved one.

Caregivers in the stigma/denial group tend to share certain demographic characteristics, although they are no more likely to care for a parent than a spouse (or vice versa). Remarkably, they appear to have largely overcome the fear of stigma/denial, and at present may be more knowledgeable than other caregivers.

• Just over half of all caregivers (57%) mentioned that fear of stigma and/or denial (including their own fear of stigma, the patient’s fear of stigma, the patient not wanting to see the doctor, and/or the caregiver not wanting to think something could be wrong with their loved one) contributed to a delayed diagnosis. On average, these caregivers’ loved ones waited 28.7 months to receive a diagnosis of Alzheimer’s disease. Those mentioning their own and/or their loved one’s fear of stigma (14% of total) report that their loved one waited 39.5 months on average to receive a diagnosis.
• Caregivers who mention stigma/denial are significantly more likely to be female than male (60% vs. 51%), and are younger on average (54.4 vs. 58.6). Caregivers for a parent versus caregivers for a spouse are about equally likely to mention fear of stigma/denial.
• Today, caregivers for whom stigma/denial delayed the initial diagnosis appear to have made a dramatic turn-around in their approach to caregiving. They are facing the disease head-on and are informing themselves about treatment options for their loved one. These caregivers are significantly more likely than others (72% vs. 59%) to say that today, they are extremely/very knowledgeable about Alzheimer’s disease. On average, they have heard of a significantly greater number of medications by name (3.1 vs. 2.6). They are significantly more likely to provide “quality of life” care for their loved one (66% vs. 51%).

Lack of long-term care planning on the part of the patient has an impact on the delay between symptoms and diagnosis. On average, those without LTC planning wait significantly longer.

• On average, those without LTC planning wait over a year longer for a diagnosis than those who made plans (31.5 vs. 20.1 months).
• Those who didn’t plan for long-term care may be generally less inclined to face issues head-on and plan for the future proactively. Those without plans are significantly more likely to indicate that the patient did not want to visit the doctor (46% vs. 31%). Caregivers for a spouse who made no plans are significantly more likely than others to say they did not want to face the possibility something could be wrong (44% vs. 21%).
• Those whose loved one made plans may generally be more conscious of the financial impact of long-term care. Not surprisingly, they are significantly more likely than those without plans to say that concerns about the cost of healthcare were a reason for the delay (12% vs. 6%).

"While facing Alzheimer's disease is never easy, getting a diagnosis is an essential step to managing and treating the disease," added Hall. "Living with this in silence can isolate people with Alzheimer's disease and their caregivers, leaving them without critical support, resources, and proper treatment. We encourage everyone touched by Alzheimer's disease to reach out for support -- help is out there."

Families Feel Abandoned, Struggle with Caring for Loved Ones on Their Own

Survey results also reveal a distinct generation gap between caregivers of parents and caregivers of spouses with Alzheimer's disease.

• Caregivers of parents are significantly more likely than caregivers of spouses to say they now have less time for themselves (74% vs. 56%) and have felt abandoned by family (34% vs. 14%).
• Caregivers of spouses confide in significantly fewer sources of support than caregivers of parents (2.7 vs. 3.3 on average), and are significantly less likely to say they would like more help (52% vs. 77%).
• In addition, caregivers of spouses (33%) are significantly more likely than caregivers of parents (12%) to indicate that their own denial was an obstacle to diagnosis.

Many sibling relationships suffer under the stress of caring for a parent with Alzheimer's disease and the division of caregiving responsibilities.

• More than half of caregivers of parents, with siblings (60%), report that they are the only one of their siblings responsible for their parent's care.
• Many of these respondents report that relationships with siblings deteriorated after a parent was diagnosed (86% of siblings were somewhat or very close prior to diagnosis vs. 75% post-diagnosis).

More Education, Support Needed

Sixty-nine percent of caregivers surveyed report that they want more help from family and friends.

Caregivers indicate that more help in certain areas could ease the caregiving strain, most notably –

• assistance with day-to-day caregiving activities (20%),
• more financial support (16%),
• more emotional support (15%) and
• more time for themselves (13%).

Caregivers of parents are significantly more likely than caregivers of spouses to feel comfortable talking about the condition with all of the people in their life (80% vs. 64%).

Caregivers overall are most likely to confide in friends (58%), physicians/healthcare professionals (41%), children (38%), spouses (35%), and siblings (33%).

Lack of knowledge about the disease is a barrier to diagnosis for two in five caregivers surveyed (40%), suggesting that more education is needed. While the majority (92%) of caregivers report that they are aware of medications that may slow the progression of symptoms, only half (51%) of caregivers surveyed are aware of the opportunity for combination therapy.

"If you notice memory problems or any other possible warning signs, such as agitation, restlessness, disorientation, or difficulty performing regular tasks, make an appointment with your doctor," said Beth Safirstein, M.D., co- president/medical director and practicing physician at the MD Clinical/MD Clinical Trials Foundation, Inc., Hallandale Beach, FL.

"Diagnosis and treatment are essential because there are treatments available, including combination therapy, that have shown to potentially help maintain a person's ability to think clearly and perform everyday tasks for a longer period of time than if left untreated."

Caregivers Emerge Stronger, More Compassionate

Remarkably, many caregivers who mentioned fear of stigma and/or denial as a reason for delay in diagnosis appear to have largely overcome their fear and are more likely than those who did not struggle with stigma and denial to say they are extremely or very knowledgeable about Alzheimer's disease (72% vs. 59%).

Moreover, the majority of caregivers surveyed report finding new, positive qualities in themselves during the process of caregiving:

• roughly two-thirds (64%) of caregivers report they have become a more compassionate person since caring for a loved one with Alzheimer's
• 76 percent of caregivers state they have learned that they are stronger than they thought since caring for someone with the disease.

The survey was conducted by Harris Interactive on behalf of AFA, a national nonprofit organization providing care and services to individuals with Alzheimer's disease and related dementias, and their families.

Primary topics covered in this survey include:

• Obstacles that may have delayed getting a diagnosis of Alzheimer’s disease
• Impact of caregiving responsibilities on the caregiver’s own family and life
• What could help to ease the burden of the responsibilities associated with caregiving
• Impact of the patient’s long-term care planning, or lack thereof, on the burden associated with caregiving
• The responsibilities associated with caregiving, and how, if at all, these vary according to caregiver gender and/or birth order