1. 1 The Journey to Dementia Capable Caregivers and Professional Support Gary L. J. Girón, MBA, M. Div., LPCC Executive Director, Alzheimer’s Association, New Mexico Chapter

2. 2 Alzheimer’s is NOT Just Memory Loss – Alzheimer’s Disease Kills The only cause of death in the top 10 that cannot be prevented, cured or slowed

3. 3 Alzheimer’s Disease Facts - 2015 2015 –5.3 million people in US have Alzheimer’s disease –200k have younger-onset Alzheimer’s disease (under 65 years) –Almost two thirds of Americans with Alzheimer’s disease are women –1 in 3 seniors will die from Alzheimer’s or another dementia –Every 67 seconds someone in the US develops the disease –In 2015, 1 in 5 Medicare dollars was spent on someone with Alzheimer’s disease

4. 4 Alzheimer’s Disease Facts - 2050 If there is no breakthough in finding a cure or effective treatments 2050, based on projections, 13.8 million people in US will have Alzheimer’s disease In 2050, 1 in 3 Medicare dollars will be spent on someone with Alzheimer’s disease Annual payments for health care, long-term care and hospice are projected to increase from 2015’s $226 billion to $1 trillion By 2050, Every 33 seconds someone in the US will develop the disease (2015 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2015)

5. 5 Alzheimer’s Disease Facts – New Mexico Within the next 10 years, 19 states will see a 40 percent or greater growth in the number of people with Alzheimer’s – This includes New Mexico 2015 – 36,000 persons 65 or older have Alzheimer’s disease 2025 – 53,000 persons 65 or older have Alzheimer’s disease –17,000 additional individuals (53,000 total) in New Mexico in the next 10 years – over a 47% increase. (2015 Alzheimer’s Disease Facts and Figures - 2015 Fact Sheet March 2015, Alzheimer’s Association, 2015)

6. 6 Alzheimer’s/Dementia Caregivers Caregiving is a difficult task that consumes the caregiver with additional responsibilities and stresses Many unpaid caregivers often neglect their own physical and mental health needs Nationally,  60% of caregivers rate their emotional stress from caregiving as high to very high  38% rate their physical stress of caregiving as high to very high  74% of caregivers report that they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver

7. 7 Alzheimer’s/Dementia Caregivers Continued Research shows that family caregivers have five areas of concern: 1.how to deal with change 2.how to manage competing responsibilities and competing stressors 3.how to be equipped to provide a broad spectrum of care 4.how to locate and use resources, and 5.how to address emotional and physical responses to care Caregivers report that they do not receive sufficient guidance from their healthcare providers Averting the Crisis - Why We Must Act Now: Rosalynn Carter Institute for Caregiving: October 2010

8. 8 Alzheimer’s/Dementia Caregivers Continued Research shows the following differences in the activities performed by Alzheimer’s disease (AD) and dementia caregivers versus other types of caregivers: Nearly two-thirds (61%) characterize themselves as having the heaviest burdens of care, compared with less than half (46%) of other caregivers (non- Alzheimer’s/dementia) 65% of AD caregivers provide the most difficult kinds of personal care – e.g. bathing, feeding and dealing with incontinence AD caregivers spend more hours a week providing care - Nearly 1 in 4 provide what the survey defines as “constant care” – committing 40 hours a week or more Caregiving responsibilities span longer periods of time -- 71% for more than a year and 32% for five years or more Most work full or part time Caregiving adversely affects their daily jobs 2004; Families Care: Alzheimer’s Caregiving in the United States 2004; Alzheimer’s Association and the National Alliance of Caregiving.

9. 9 Alzheimer’s/Dementia Caregivers Continued Caregiver education allows the caregiver to learn new skills that will enable them to continue providing care and improve their capability as caregivers. This assists in delaying or avoiding institutionalization of the person with Alzheimer's or dementia. Nationally, the data shows that on average it takes three caregivers to support one person with Alzheimer’s (2015 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2015)

10. 10 The Savvy Caregiver Program Evidenced based education course for caregivers of people with Alzheimer's disease and other dementias The program teaches people to manage the task of caregiving more effectively The program provides – –Information about AD and dementia and how it affects the person with the disease and the family –Increases caregiver confidence and coping ability –Strengthens caregivers’ practical skills for dealing with daily caregiving tasks –Increases caregiver confidence and coping ability –Works to improve communication skills –Decreases caregiver burden, depression and reaction to behavior Reinforces the concept that a caregiver needs education, support, self-care techniques, and respite The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Caregiver Training Program; Hepburn, Lewis, Sherman and Tornatore, 2003 Dementia Family Caregiver Training: Affecting Beliefs About Caregiving and Caregiver Outcomes: Hepburn, Tornatore, Center, and Ostwald: 2001

11. 11 The Savvy Caregiver Program Three caregiver education classes supported by the NM Alzheimer’s Association: Savvy Caregiver Education Savvy Caregiver In Indian Country Cuidando Con Respeto

12. 12 The Savvy Caregiver Workshop Objectives Help Caregivers appreciate the Scope and Impact of their work Reduce the Potential Adverse Impacts of Caregiving Increase Caregiver’s Skills and Knowledge for Caregiving Help Caregivers adopt a more Strategic Outlook on their work Help Caregivers Develop More Effective Strategies for Caregiving Improve Caregivers’ Self-Care skills Increase involvement of Families and other resources

13. 13 The Savvy Caregiver Workshop Session 1 Objectives Introductions and Purposes of Program Gain Appreciation for the Caregiving Role – an “Unexpected Career” Appreciate Dementia and its Impact on the Person Introduce Workshop Resources – Text, Slides and Handouts

14. 14 The Savvy Caregiver Workshop Session 2: Objectives Develop Strategies for Self-Care Develop Caregiving Strategies Based on an Understanding of the Disease

15. 15 The Savvy Caregiver Workshop Session 3: Objectives Develop an Appreciation for the Benefits of “Contented Involvement” Appreciate How “Fit” Contributes to Contented Involvement Learn the Allen Scale of Progressive Dementia

16. 16 The Savvy Caregiver Workshop Session 4: Objectives Introduce Anchors of Contented Involvement Matching Structure, Support and Personal Preferences to the Strengths of the Person

17. 17 The Savvy Caregiver Workshop Session 5: Objectives Continue Strengthening/Improving Caregiving Skills Increase Sense of Mastery in Caregiving Learn Decision Making Tools

18. 18 The Savvy Caregiver Workshop Session 6: Objectives Learn Strategies for More Effectively Utilizing Family as a Caregiving Resource Recap

19. 19 The Savvy Caregiver Workshop Session 7: Objectives Recap of lessons learned in course Go back to the concept that a caregiver needs education, support, self-care techniques, and respite Barriers to asking for help Reframing what help looks like Tools for decision making Family as a caregiving resource Other caregiving resources – friends, community Alzheimer’s Association Support Groups throughout the state Continuing support from the Alzheimer’s Association

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21. 21 Visit our Table for more information or To register to become a Savvy Caregiver Trainer

22. 22 Alzheimer’s Association, New Mexico Chapter Greater Albuquerque Area Regional Office 9500 Montgomery Blvd. NE Suite 121 Albuquerque, NM 87111 (505) 266-4473 Northeastern Regional Office 811 St. Michael’s Drive Suite 106 Santa Fe, NM 87505 (505) 473-1297 Northwestern Regional Office 3300 N. Butler Suite 221 Farmington, NM 87401 (505) 326-3680 Southeastern Regional Office 404 1/2 N. Kentucky Roswell, NM 88201 (575) 624-1552 Southwestern Regional Office 125 N. Main Street Las Cruces, NM 88011 (575) 647-3868

23. 23 NortheastNorthwest SoutheastSouthwest Greater Albuquerque

24. 24 Core programs Early Stage Engagement Education Respite Information & Referral Helpline Care Consultation Safety Programs Support Groups Savvy Caregiver Training

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