Impact of Caregiving on the Caregiver

1. Impact of Caregiving on the Caregiver Katie Maslow June 3, 2009

2. Number of Alzheimer’s/Dementia Caregivers, Hours and Value of Care The Alzheimer’s Association estimates that in 2008: • 9.8 million Americans provided unpaid care for a person with Alzheimer’s or other dementia • These unpaid caregivers provided 8.4 billion hours of care • The economic value of this unpaid care (valued at $11.10 an hour) was $89 billion.

3. Proportion of All Caregivers The Alzheimer’s Association estimates that 29% of all unpaid caregivers are providing care for a person who: • has Alzheimer’s disease or dementia as his/her main problem • has Alzheimer’s disease, dementia, or memory problems in addition to his/her main problem

4. Impact of Caregiving on the Caregiver’sEmotional Well-Being • Some caregivers have little emotional difficulty • More than 40% have high emotional stress • About 1/3 have symptoms of depression • Caregiver stress is related to nursing home placement, but caregiver stress is often just as high after nursing home placement

5. Impact of Caregiving on the Caregiver’s Health Compared with other unpaid caregivers, caregivers of people with Alzheimer’s and other dementias: • are more likely to report fair or poor health • are more likely to say that caregiving made their health worse

6. Impact of Caregiving on the Caregiver’s Health (cont.) Compared with non-caregivers, caregivers of people with Alzheimer’s and other dementias are more likely to have: • High levels of stress hormones • Reduced immune function • New hypertension • New heart disease

7. Impact of Caregiving on the Caregiver’s Health (cont.) A 2008 study found that among spouse caregivers of people with Alzheimer’s and other dementias: • 24% had an ER visit or hospitalization in the 6 months before the study began • those who were more depressed or were taking care of a person with behavioral symptoms were more likely to have an ER visit or hospitalization

8. Impact of Caregiving on the Caregiver’s Health (cont.) • Many Alzheimer’s/dementia advocates say that 40%, 50%, 60+% of caregivers die before their care recipient • There are no data to support that statement • One study of caregivers in general found that caregivers who were experiencing strain were 63% more likely to die than non-caregivers; over 4 years, about 17% of the caregivers died compared with almost 11% of the non-caregivers

9. Impact of Caregiving on the Caregiver’s Employment One study found that among employed caregivers of people with Alzheimer’s or other dementias: • 2/3 had to go in late, leave early, or take time off • 18% had to take a leave of absence • 13% had to reduce their hours • 8% had turned down promotions Another study found that caregivers of people with Alzheimer’s and other dementias were 31% more likely than other caregivers to have reduced their hours or quit work; if the person with Alzheimer’s or other dementia had behavioral symptoms, this difference more than doubled to 68%

10. Impact of Caregiving on the Caregiver’s Income and Financial Security • Caregivers who reduce their hours, quit work, or turn down promotions lose job related income and benefits • Many caregivers have high out-of-pocket expenses for caregiving

11. The Economic Downturn and Family Caregiving A national survey of caregivers in general conducted in early 2009 found that: • 50% of caregivers said they were less comfortable taking time off work • 43% said they have had their hours or pay cut • 30% said they have had to work more hours or get another job • 15% said they had been laid off • 51% said the economic downturn has increased their stress about caregiving

12. Factors that Worsen the Impact of Caregiving • Behavioral symptoms of the care recipient • Co-existing medical conditions of the care recipient • Lack of perceived help from other family members and friends • Belief that one has no choice about caregiving • Many personality characteristics of the caregiver and the care recipient and their prior relationship

13. Many Negative Impacts of Caregiving on the Caregiver Can Be Reduced • Rigorous research shows that interventions to inform and support unpaid caregivers of people with Alzheimer’s and other dementias can reduce the negative impact of caregiving on the caregiver’s emotional well-being • Many of these interventions are now being translated from research to practice in ADSSP projects and other projects funded by RCI and the VA • We have no data on the effects of these interventions on reducing the negative impacts of caregiving on caregiver health, employment, or income

14. Race/Ethnicity and Culture • Seem to affect the impact of caregiving on the caregiver’s emotional stress • Seem to affect the results of interventions to inform and support family caregivers

15. We Often Don’t Talk About: positive impacts of caregiving on the caregiver

16. We Often Don’t Talk About: impacts of ongoing changes in the person with Alzheimer’s or other dementia on the caregiver

17. We Often Don’t Talk About: impacts of the co-existing medical conditions of the person with Alzheimer’s or other dementia on the caregiver

18. We Often Don’t Talk About: impacts of the perceived suffering of the person with Alzheimer’s or other dementia on the caregiver