News Topic caregivers

About these topic collections

I’ve been reporting on memory research for over ten years and these topic pages are simply collections of all the news items I have made on a particular topic. They do not pretend to be in any way exhaustive! I cover far too many areas within memory to come anywhere approaching that. What I aim to do is provide breadth, rather than depth. Outside my own area of cognitive psychology, it is difficult to know how much weight to give to any study (I urge you to read my blog post on what constitutes scientific evidence). That (among other reasons) is why my approach in my news reporting is based predominantly on replication and consistency. It's about the aggregate. So here is the aggregate of those reports I have at one point considered of sufficient interest to discuss. If you know of any research you would like to add to the collection, feel free to write about it in a comment (please provide a reference).


A study involving 206 spousal and adult children caregivers of dementia sufferers (mostly Alzheimer’s) has found that about 84% of caregivers reported a clinically significant burden. Three factors were significant contributors to the burden:

  • the direct impact of providing care on the caregiver’s life
  • guilt
  • frustration or embarrassment.

Caregiver depression and age predicted the first two factors. Caregivers' satisfaction with their relationship with the patient and patients' functional independence also predicted the direct impact of caregiving upon caregivers' lives. Patients' behavioral problems and caregivers' relationship satisfaction predicted frustration/embarrassment.

Caregiver burden has been found to be associated with poorer physical health, and increased rates of emotional distress and depression. This study shows that caregiver burden has several dimensions, each with its own predictors. The finding suggests that caregivers may benefit from interventions tailored to their specific subtype of burden.

http://www.eurekalert.org/pub_releases/2013-07/l-rhc071813.php

[3608] Springate, B. A., & Tremont G. (2014).  Dimensions of Caregiver Burden in Dementia: Impact of Demographic, Mood, and Care Recipient Variables. The American Journal of Geriatric Psychiatry. 22(3), 294 - 300.

A study involving 254 people with dementia living at home has found that 99% of people with dementia and 97% of their caregivers had one or more unmet needs, 90% of which were safety-related. More than half of the patients had inadequate meaningful daily activities at a senior center or at home, one-third still needed a dementia evaluation or diagnosis, and more than 60% needed medical care for conditions related or unrelated to their dementia.

Unmet needs were significantly greater in those with higher cognitive function, in those with more depression, and those with lower income. Caregivers with less education and more symptoms of depression also had significantly more unmet needs.

Previous research has shown that greater unmet needs among people with dementia are predictive of nursing home placement and death. Caregiver stress also predicts nursing home admission for people with dementia.

The findings suggests that routine assessments of patient and caregiver care needs coupled with simple fixes in basic medical and supportive services and safety (such as, grab bars in the bathroom, carpets safely tacked down to prevent falls, and — a very American one — guns locked away) could go a long way toward keeping those with dementia from ending up in a nursing or assisted-living facility.

http://www.eurekalert.org/pub_releases/2013-12/jhm-lah121913.php

[3553] Black, B. S., Johnston D., Rabins P. V., Morrison A., Lyketsos C., & Samus Q. M. (2013).  Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study. Journal of the American Geriatrics Society. 61(12), 2087 - 2095.

A study involving 61 women, of whom 33 were chronically stressed caring for a spouse or parent with dementia, has found that highly stressed people who ate a lot of high-fat, high-sugar food were likely to have:

  • a larger waistline,
  • more truncal fat,
  • higher oxidative damage, and
  • more insulin resistance.

This association was not found among the low-stress women who ate the same amount of unhealthy food.

The findings are consistent with animal studies.

http://www.eurekalert.org/pub_releases/2014-04/uoc--csh042914.php

A meta-analysis of six studies from around the world, involving 75,498 couples, has found that a spouse had a 26% greater risk of developing diabetes if the other had been diagnosed with type 2 diabetes.

http://www.futurity.org/spouse-diabetes-raises-partners-risk/

A study in which 136 older couples (average age 63) filled out questionnaires measuring their overall marriage quality and their perceived support from their spouse, has found that calcification in the coronary arteries was highest when both partners in the relationship viewed each other as offering ambivalent support (sometimes helpful, sometimes not). When only one partner felt this way, the risk was significantly less.

Overall marital satisfaction didn’t have a significant impact on this cardiovascular risk factor.

About 30% of individuals viewed their partner as delivering positive support, while 70% viewed their partner as ambivalent.

http://www.sciencedaily.com/releases/2014/02/140206101020.htm

Family caregivers of dementia sufferers who are reluctant to use adult day care services might like to note the findings of a telephone survey. The study involved eight daily telephone interviews on consecutive days with 173 family caregivers who use an ADS on some days.

Use of adult day services was associated with lowered anger in caregivers, reduced impact of non-care stressors on depressive symptoms (despite a small increase in non-care stressors), and more positive experiences. The findings suggest that adult day care services can be a valuable strategy for reducing caregiver stress.

I’d like also to note in passing another study involving 125 family caregivers, half of whom were given training in managing dysfunctional thoughts about caregiving and self-help techniques. Such training did significantly improve mental health, and was perhaps especially welcomed by men, who attended more often.

http://www.eurekalert.org/pub_releases/2013-05/ps-ads052313.php

[3440] Zarit, S. H., Kim K., Femia E. E., Almeida D. M., & Klein L. C. (2013).  The Effects of Adult Day Services on Family Caregivers’ Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study. The Gerontologist.

[3434] Rodriguez-Sanchez, E., Patino-Alonso M. C., Mora-Simón S., Gómez-Marcos M. A., Pérez-Peñaranda A., Losada-Baltar A., et al. (2013).  Effects of a Psychological Intervention in a Primary Health Care Center for Caregivers of Dependent Relatives: A Randomized Trial. The Gerontologist. 53(3), 397 - 406.

The New York Times' New Old Age blog has a lovely and helpful account of how a group of friends are supporting a friend with Alzheimer’s.

... Friendships often fade or collapse at this point. Alzheimer’s is gaining on cancer as the most feared disease. Even when people don’t want to turn away, they don’t know how to preserve relationships with those who can’t easily maintain a conversation or recall a shared past. Family members are expected to step up, but friends can slip away.

The SSG members decided, instead, that each week one of them would spend time with their friend. They’re passing along their experiences here in hopes that others will organize themselves to sustain friendships with people developing dementia. ...

Read more at the New Old Age blog

A new tool that should help in the managing of dementia symptoms is designed to be easily and quickly employed, and is a reliable and sensitive measure of dementia change (over 3 months).

Dementia is a progressive illness, and its behavioral and psychological symptoms are, for caregivers, the most difficult symptoms to manage. While recent research has demonstrated how collaborative care can reduce these symptoms and reduce stress for caregivers, the model requires continuous monitoring of the symptoms. What’s needed is a less arduous way of monitoring changes in symptoms.

A new questionnaire for assessing dementia progression has now been validated. The Healthy Aging Brain Care Monitor is simple, user-friendly and sensitive to change in symptoms. Its 31 items cover cognitive, functional, and behavioral and psychological symptoms of the patient, as well as caregiver quality of life, and takes about six minutes for a caregiver to complete.

Some of the specific items that may be of interest include:

  • Repeating the same things over and over
  • Forgetting the correct month or year
  • Handling finances
  • Planning, preparing or serving meals
  • Learning to use a tool, appliance, or gadget

You can see the full questionnaire at http://www.indydiscoverynetwork.org/HealthyAgingBrainCareMonitor.html. The HABC Monitor and scoring rules are available without charge.

The four factors (cognitive; functional; behavioral and psychological; caregiver quality of life) were all significantly correlated, with one exception: cognitive and caregiver quality of life.

The validating study involved 171 caregivers, of whom 52% were the children of the patients, 34% were spouses, 6% were siblings, and 4% were grandchildren. The participant group included 61% identifying as white, 38% African-American, and 1% other. Only 1% was Hispanic.

The study found good internal consistency (0.73–0.92); good correlations with the longer and more detailed Neuropsychiatric Inventory (NPI) total score and NPI caregiver distress score; and greater sensitivity to three-month change compared with NPI “reliable change” groups.

The value of this new clinical tool lies in its brevity. Described as a ‘blood pressure cuff’ for dementia symptoms, the one-page questionnaire is designed to fit into a health visit easily.

The researchers note some caveats, including the fact that it was validated in a memory care practice setting and not yet in a primary care setting, and (more importantly) only over a three-month period. Future projects will assess its sensitivity to change over longer periods, and in primary care.

The American Academy of Neurology has updated its guidelines on when people with dementia should stop driving. The guidelines support caregivers’ instincts, but not use of the patient’s own self-rating.

The American Academy of Neurology has updated its guidelines on when people with dementia should stop driving. While the guidelines point out that this decision is a complex one that should be made by a doctor using the Clinical Dementia Rating scale, they also supported caregivers’ instincts, which have been found to often be correct. For caregivers and family members, the following warning signs are identified:

  • Decreased miles being driven
  • Collisions
  • Moving violations
  • Avoiding certain driving situations, such as driving at night or in the rain
  • Aggressive or impulsive personality traits

However, the patient’s own self-rating, and a lack of situational avoidance, are not regarded as useful evidence.

A long-running study has revealed that caring for a spouse with dementia is as strong a risk factor for developing Alzheimer's as having the 'Alzheimer's gene'.

A 12-year study involving 1,221 married couples ages 65 or older (part of the Cache County (Utah) Memory Study) has revealed that husbands or wives who care for spouses with dementia are six times more likely to develop Alzheimer’s themselves than those whose spouses don't have it. The increased risk is of comparable size to having the ‘Alzheimer's gene’. The researchers speculate that the great stress of caregiving might be responsible for the increased dementia risk, emphasizing the need for greater caregiver support.

[1583] Norton, M. C., Smith K. R., Østbye T., Tschanz J. A. T., Corcoran C., Schwartz S., et al. (2010).  Greater Risk of Dementia When Spouse Has Dementia? The Cache County Study. Journal of the American Geriatrics Society. 58(5), 895 - 900.

Older news items (pre-2010) brought over from the old website

Close caregiver relationship may slow Alzheimer's decline

A study of 167 pairs of caregivers and Alzheimer's patients has found that by the end of the study patients whose caregivers had scored their relationship as particularly close lost less than half as many points on average on a common cognitive test called the Mini-Mental State Exam (MMSE) as patients with more distant caregivers. The scores were based on a survey in which caregivers rated their level of agreement or disagreement with six statements, such as "My relationship with the care recipient is close"; "The care recipient makes me feel like a special person"; and "The care recipient and I can always discuss things together." The effect was strongest when the caregiver was a spouse, as opposed to an adult child or in-law. Patients with close spouses showed rates of decline similar to patients taking Alzheimer's drugs called acetylcholinesterase inhibitors. However, it can’t be ruled out that the effect may be due to slower decline encouraging caregivers to remain close. A follow-up study is planned to answer this question.

http://www.eurekalert.org/pub_releases/2009-07/jhmi-ccr072209.php

Norton, M.C. et al. 2009. Caregiver–Recipient Closeness and Symptom Progression in Alzheimer Disease. The Cache County Dementia Progression Study. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, Advance Access published on June 29, 2009.

Results of caregiver survey

Results from the third annual Alzheimer’s Foundation of America Investigating Caregivers’ Attitudes and Needs Survey found that about three in five caregivers say their children aged 8 to 21 are involved in caring for a loved one with Alzheimer’s. Of the caregivers who feel they do a good job balancing the care of their loved ones with Alzheimer’s disease and children under 21, more than one-third (36%) specifically cited support from children as a contributor to their success. Additionally, nearly two-thirds (63%) would like more information about how to help their children cope when a loved one is diagnosed with Alzheimer’s. Caregivers of sufferers whose diagnosis was delayed for a year or more say the delay was most often due to lack of caregiver familiarity with symptoms or insufficient knowledge about Alzheimer’s. Additional key survey findings can be found at www.alzfdn.org.

http://www.eurekalert.org/pub_releases/2008-03/fi-nad032508.php

Counseling Alzheimer's caregivers postpones the nursing home

A long-running study of 406 people caring for a spouse with dementia has found that a program of individual and family counseling sessions and ongoing support for caregivers delays by an average of 1.5 years the time when people with dementia are usually put in nursing homes.

http://www.eurekalert.org/pub_releases/2006-11/nyum-cac110806.php

Mittelman, M.S., Haley, W.E., Clay, O.J. & Roth, D.L. 2006. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 1592-1599.

Individualized counseling helps caregivers

A study of 642 people who were caring for a relative with Alzheimer's disease or a related disorder has found that those who participated in a counseling program were less likely to suffer depression and felt more confident and able to deal with caring for their relative. Hispanic and white participants saw the greatest benefit. In African-Americans, the intervention was effective among spouse-caregivers, but relatively ineffective among caregivers who were caring for a relative other than their husband or wife. Hispanics had the greatest improvement in reduction of caregiver depressive symptoms and problem behaviors of the recipient. Whites saw the most impact in the area of social support and African-American spouse-caregivers had the most positive outcome in reducing the caregiver burden and improving self-care.

http://www.eurekalert.org/pub_releases/2006-11/uopm-idc111506.php
http://www.eurekalert.org/pub_releases/2006-11/nioa-npe111606.php

Belle, S.H. et al. 2006. Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial. Annals of Internal Medicine, 145(10), 727-738.

Collaborative care has better outcomes for both patients and caregivers

An 18-month study involving 153 older adults with Alzheimer's disease and their caregivers has found that restructuring the primary care practice environment to emphasize a team approach to care significantly improved the quality of care and behavioral and psychological symptoms of dementia. Caregivers were also less stressed and less depressed.

http://www.eurekalert.org/pub_releases/2006-05/iu-lai050406.php

Callahan, C.M. et al. 2006. Effectiveness of Collaborative Care for Older Adults With Alzheimer Disease in Primary Care: A Randomized Controlled Trial. JAMA, 295, 2148-2157.

Enhanced counseling eases depression among caregivers

A new report from of the NYU Spouse-Caregiver Intervention Study shows that a six-session counseling and long-term support program substantially eases the depression of people caring for a loved one with Alzheimer’s, and that the mental health benefits apparently are long lasting. The study involved 406 caregivers, half of whom received the usual counseling--sessions provided on an ad-hoc basis upon request (control group). The other half was given three additional types of counseling: two sessions of individual counseling, four sessions of counseling with their family, and then weekly meetings with a support group of fellow caregivers. After one year, some 45% of the control group had symptoms of clinical depression, compared with 30% of those who had received special counseling. This group still showed fewer symptoms of depression on average than those in the control group three years later. There was no difference after five years. It was suggested that key factors in the enhanced treatment program were having the same counselor for all sessions, the use of multiple types of coordinated therapy, and counseling tailored to the particular coping challenges that each of the caregivers and their families were dealing with.

http://www.eurekalert.org/pub_releases/2004-05/nyum-ece042704.php

Mittelman, M.S., Roth, D.L., Coon, D.W. & Haley, W.E. 2004. Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of Patients With Alzheimer’s Disease. American Journal of Psychiatry, 161, 850-856.

Knowledge about Alzheimer's

It’s often argued that telling people that they carry genes increasing their risk of Alzheimer’s will simply upset them to no purpose. A new study challenges that idea.

The study, involving 648 middle-aged adults tested for the “Alzheimer's gene” APOe4, found that 4% were in the highest risk group (carrying two copies of APOe4), while 34% had a single copy, and 62% had none. A year later, APOe4 carriers did not experience more anxiety, depression or distress than non-carriers, and were more active in efforts to reduce their risk of Alzheimer's disease — by exercising, eating a healthy diet and taking recommended vitamins and medications.

However, a more recent study of older adults has found that being told of their genetic status affected their cognitive performance. Specifically, those told they had the Alzheimer's gene judged their memory more harshly, and performed more poorly on a verbal memory test, than those who had the gene but had chosen not to be told. Similarly, those told they did not have the Alzheimer's gene judged their memory more positively, and performed better on the memory test, than those who didn't have the gene but didn't know that.

This is, of course, entirely in keeping with research showing that a person's beliefs about their memory have a significant effect on their cognition.

The study involved 144 cognitively normal older adults (aged 52–89), of whom 74 knew their genetic status (25 had the gene vs 49 without), and 70 did not (25 with vs 45 without).

Taking the findings from both these studies together, it seems likely that providing appropriate advice and support to those informed of their negative genetic status is vital, and that this may be particularly crucial for older adults, who may be more vulnerable to negative results.

http://www.eurekalert.org/pub_releases/2013-07/uops-hra071513.php

http://ajp.psychiatryonline.org/article.aspx?articleID=1819677

Karlawish et al. 2013. What is the experience of being an APOE4 homozygote? Findings from the REVEAL Study. Presented on July 16 at the 2013 Alzheimer's Association International Conference.

Lineweaver  TT;  Bondi  MW;  Galasko  D;  Salmon  DP:  Effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults.  Am J Psychiatry 2014; 171:201–208

The New York Times' New Old Age blog has a lovely and helpful account of how a group of friends are supporting a friend with Alzheimer’s.

... Friendships often fade or collapse at this point. Alzheimer’s is gaining on cancer as the most feared disease. Even when people don’t want to turn away, they don’t know how to preserve relationships with those who can’t easily maintain a conversation or recall a shared past. Family members are expected to step up, but friends can slip away.

The SSG members decided, instead, that each week one of them would spend time with their friend. They’re passing along their experiences here in hopes that others will organize themselves to sustain friendships with people developing dementia. ...

Read more at the New Old Age blog

A new tool that should help in the managing of dementia symptoms is designed to be easily and quickly employed, and is a reliable and sensitive measure of dementia change (over 3 months).

Dementia is a progressive illness, and its behavioral and psychological symptoms are, for caregivers, the most difficult symptoms to manage. While recent research has demonstrated how collaborative care can reduce these symptoms and reduce stress for caregivers, the model requires continuous monitoring of the symptoms. What’s needed is a less arduous way of monitoring changes in symptoms.

A new questionnaire for assessing dementia progression has now been validated. The Healthy Aging Brain Care Monitor is simple, user-friendly and sensitive to change in symptoms. Its 31 items cover cognitive, functional, and behavioral and psychological symptoms of the patient, as well as caregiver quality of life, and takes about six minutes for a caregiver to complete.

Some of the specific items that may be of interest include:

  • Repeating the same things over and over
  • Forgetting the correct month or year
  • Handling finances
  • Planning, preparing or serving meals
  • Learning to use a tool, appliance, or gadget

You can see the full questionnaire at http://www.indydiscoverynetwork.org/HealthyAgingBrainCareMonitor.html. The HABC Monitor and scoring rules are available without charge.

The four factors (cognitive; functional; behavioral and psychological; caregiver quality of life) were all significantly correlated, with one exception: cognitive and caregiver quality of life.

The validating study involved 171 caregivers, of whom 52% were the children of the patients, 34% were spouses, 6% were siblings, and 4% were grandchildren. The participant group included 61% identifying as white, 38% African-American, and 1% other. Only 1% was Hispanic.

The study found good internal consistency (0.73–0.92); good correlations with the longer and more detailed Neuropsychiatric Inventory (NPI) total score and NPI caregiver distress score; and greater sensitivity to three-month change compared with NPI “reliable change” groups.

The value of this new clinical tool lies in its brevity. Described as a ‘blood pressure cuff’ for dementia symptoms, the one-page questionnaire is designed to fit into a health visit easily.

The researchers note some caveats, including the fact that it was validated in a memory care practice setting and not yet in a primary care setting, and (more importantly) only over a three-month period. Future projects will assess its sensitivity to change over longer periods, and in primary care.

Several recent reports point to the need for GPs to be better informed about the initial symptoms of dementia and mild cognitive impairment.

Functional impairment good indicator of mild cognitive impairment

Evaluation of 816 older adults, of whom 229 had no cognitive problems, 394 had a diagnosis of amnestic mild cognitive impairment, and 193 had a diagnosis of mild Alzheimer’s, has revealed that most of those with aMCI (72%) or AD (97%) had trouble with at least one type of function on the Pfeffer Functional Activities Questionnaire. Only 8% of controls had any difficulty. In both impaired groups, those who had the most difficulty functioning also tended to score worse on cognition tests, have smaller hippocampal volumes, and carry the APOe4 gene.

Two of the ten items in the questionnaire were specific in differentiating the control group from the impaired groups. Those items concerned "remembering appointments, family occasions, holidays, and medications” and "assembling tax records, business affairs, or other papers." Only 34% of those with aMCI and 3.6% of those with AD had no difficulty with these items.

The findings suggest that even mild disruptions in daily functioning may be an important clinical indicator of disease.

Early-onset Alzheimer’s poorly diagnosed when initial symptoms aren’t memory related

Post-mortem analysis of 40 people diagnosed  with early-onset Alzheimer’s has revealed that about 38% experienced initial symptoms other than memory problems, such as behavior, vision or language problems and a decline in executive function, or the ability to carry out tasks. Of these, 53% were incorrectly diagnosed when first seen by a doctor, compared to 4% of those who had memory problems. Of those with unusual initial symptoms, 47% were still incorrectly diagnosed at the time of their death.

The mean age at onset was 54.5 years (range 46-60). The average duration of the disease was 11 years, with an average diagnostic delay of 3 years.

GPs misidentify and fail to identify early dementia and MCI

A review of 30 studies involving 15,277 people seen in primary care for cognitive disorders, has found that while GPs managed to identify eight out of ten people with moderate to severe dementia, they only identified 45% of those with early dementia and mild cognitive impairment. Moreover, they were very poor at recording such diagnoses. Thus, though they recognized 45% of the MCI cases, they only recorded 11% of these cases in their medical notes. Although they identified 73% of people with dementia, they made correct annotations in medical records in only 38% of cases.

But the problem is not simply one of failing to diagnose — they were even more likely to misidentify dementia, and this was particularly true for those with depression or hearing problems.

The findings point to the need for more widespread use of simple cognitive screening tests.

Prevalence of dementia & MCI in 'oldest old' women

Data from 1,299 women enrolled in the Women Cognitive Impairment Study of Exceptional Aging suggests that the incidence of dementia almost doubles with every 5 years of age and prevalence rises from approximately 2-3% in those 65 to 75 years to 35% in those 85+.

Among those with mild cognitive impairment, amnestic multiple domain was most common (34%), followed by non-amnestic single domain (29%). Amnestic single domain (affecting only one type of cognitive function, including memory difficulty) affected 22%.

Alzheimer's disease and mixed dementia accounted for nearly 80% of dementia cases, and vascular dementia for 12.1%.

Those with dementia tended to be older, less likely to have completed high school, more likely to have reported depression, a history of stroke, and to have the APOEe4 gene.

The women in the study had an average age of 88.2 years and 27% were older than 90. 41% had clinical cognitive impairment (17.8% with dementia and 23.2% with mild cognitive impairment).

The high prevalence of cognitive impairment in this age group points to the importance of screening for cognitive disorders, particularly among high-risk groups.

Older news items (pre-2010) brought over from the old website

Poor Understanding of Alzheimer's Link to Heart Health Risk Factors

An online survey of 690 adults (average age 50; well-educated, with 87% having had some college) found that 64% did not realize there was an association between Alzheimer's and obesity or high blood pressure; 66% didn’t know that high stress is a risk factor for dementia; 34% didn’t know that physical exercise is a protective factor.

Jackson, C.E. et al. 2009. Dementia literacy: Public understanding of known risk factors. Presented at the Alzheimer's Association International Conference on Alzheimer's Disease July 11-16 in Vienna.

Misconceptions about Alzheimer's common

A recent survey of nearly 1200 people has found a high degree of misconceptions about Alzheimer’s in America. Half the respondents were unaware that anything could be done to maintain cognitive functioning and reduce Alzheimer's risk. Although there were no significant differences among races in the level of concern about getting Alzheimer's, many more blacks and Hispanics than whites responded that they believe that Alzheimer's is a normal part of aging. However, blacks and Hispanics were also more likely than whites to report changing their diet or lifestyle to avoid developing Alzheimer's.
http://www.eurekalert.org/pub_releases/2007-09/uom-maa091807.php

Connell, C.M., Scott Roberts, J. & McLaughlin, S.J. 2007. Public Opinion About Alzheimer Disease Among Blacks, Hispanics, and Whites: Results From a National Survey. Alzheimer Disease & Associated Disorders, 21(3), 232-240.

Survey reveals ethnic differences in knowledge about Alzheimer's

The Alzheimer's Foundation of America's (AFA) second Investigating Caregivers' Attitudes and Needs survey has revealed that African-American and Hispanic caregivers of people with Alzheimer's disease are significantly more likely (37% and 33%, respectively) than caregivers of other races (23%) to consider the disease a normal part of the aging process and also more likely (70% and 67%, vs 53%) to dismiss its symptoms as part of getting older, thus delaying diagnosis. They were also more likely (67% and 63%, vs 49%) to report that they did not know enough about the disease to recognize the symptoms.

Fears of stigma also play a part in delaying diagnosis, with around one-third (33%) of respondents reporting that their loved one's concern about stigma delayed diagnosis, and about a quarter (26%) indicating that their own concern about stigma contributed to the delay. African-American caregivers were significantly more concerned about stigma (36%) than Hispanic (22%) and other race (18%) caregivers.

Races other than African-American and Hispanic were far more likely to consider placing their loved one in a facility: 32% compared to African-American (19%) and Hispanic (21%) caregivers. African-American and Hispanic caregivers were more likely to use a support groups than other races (47% and 50%, vs 29%). Yet only around half of African-American respondents and a little more than one-third of Hispanic respondents said that they felt the support groups they were able to access were appropriate to their specific religious or ethnic background. At diagnosis, caregivers overall wished they had received more information about Alzheimer's disease (75%) and treatment options (75%), with African-American caregivers (83%) significantly more likely than Hispanic (73%) and other (68%) caregivers to wish they had received more information.
http://www.eurekalert.org/pub_releases/2007-03/fi-srm030907.php

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