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.

[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.

[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.

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.

[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.

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 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. 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 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 JA. 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.

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

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.

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.

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.

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.

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.