SOCIAL SUPPORT and MENTAL HEALTH NEEDS of CAREGIVERS of THOSE WITH EARLY-ONSET DEMENTIA Elaine S. Rinfrette, Ph.D., LCSW-R University at Buffalo School of Social Work BACKGROUND EARLY-ONSET DEMENTIA Dementia starts before age 65 Much less common than late-onset dementia Prevalence estimated: 0.6% in males and 0.8% in females Very rare before age 45 (Harvey, 2001) Early-onset Alzheimer’s disease can begin in early 30’s with reports of onset in the mid-20’s Differs from late-onset Alzheimer’ s disease: -duration of the disease -presence of myoclonus (sudden, involuntary muscle jerking) -prominence of psychiatric symptoms -usually has a rapid onset and progression (Hodges, 2001) INFORMAL CAREGIVERS Informal caregivers (“caregivers”) called “second victims” or “hidden patients” of dementia with risks for social isolation, stress, depression, death (Winter & Gitlin, 2007) GOALS OF THE STUDY Because of the low prevalence of early-onset dementia, much less is known about the impact of caregiving for individuals with this disorder compared to the impact on caregiving for those with late-onset dementia. 1. Explore the impact of early-onset dementia on the life of the caregiver 2. Ascertain the unique challenges and consequences that occur for the caregivers MATERIALS AND METHODS MIXED METHODS INVESTIGATION, N=20 QUALITATIVE METHOD Phenomenology (an approach to knowing based on returning to the thing itself) does not impose a theoretical structure on lived experience. It posits that the world exists independent of our perception of it (van Manen, 1990). Phenomenology proposes a method for illuminating the MEANING of the phenomena and examines the underlying meaning structures in the descriptions of lived experience. Meaning underpins the individual’s thoughts, feelings, relationships, & activities. PRIMARY RESEARCH QUESTION “What is life like for you now that your _____has early-onset dementia?” ADDITIONAL RESEARCH QUESTIONS (1) “Are you the person that primarily helps _______ with his/her needs or provides his/her care?” (2) If the participant was not the primary caregiver, they were asked “How would you describe your role in helping _______?” (3) “How has the caregiving experience changed for you since it first began?” (4) “Please describe the positive aspects of this experience.” (5) “Is there anything else you would like to add?” QUANTITATIVE METHOD Impact of Event Scale – Revised (IES-R) Horowitz, Wilner, & Alvares (1979) & Weiss & Marmar (1997) Short, self-report questionnaire consisting of 22 questions; Measures the subjective response to a specific traumatic event; Addresses the three symptom clusters typical in PTSD: avoidance, intrusion, and hyperarousal Orientation to Life Questionnaire (OLQ) Antonovsky, 1983 A 29-item self-report scale using 7 point Likert scale; A positive and negative phrase is at the end of each item (e.g. When you talk to people, do you have the feeling that they don’t understand you?); Measures concept of “Sense of Coherence” (comprehensiveness, manageability, meaningfulness); Used worldwide Posttraumatic Growth Inventory (PTG) Tedeschi & Calhoun, 1996 A 21-item self-administered instrument with six levels of response; Addresses areas described as new possibilities, relating to others, personal strength, spiritual change, and appreciation of life QUALITATIVE RESULTS THEME 1: DIAGNOSTIC ISSUES Fear about changes; Confusion about changes; Diagnosis long in coming; Shock about diagnosis; Multiple caregiver stressors in addition to Early-onset dementia; Changes are difficult THEME 2: PSYCHOLOGICAL ISSUES Living a nightmare; Helplessness; Horror; Guilt; anger; frustration with individual with EOD &/or family members; Ambiguous grief; Depression/lethality; Multiple stressors (care of young children, economic concerns, employment issues); Fatigue (sleep disturbance, exhaustion); Personal health problems; Health problems of other family members; Multiple fears (violent behavior of affected individual, ability to continue care, placement problems. genetic transmission); Housing dilemmas; Difficult decisions (residential placement, medical care, end- of-life decisions); Shortened life expectancy of affected person; Financial stress ; Anticipatory trauma THEME 3: CAREGIVER ROLE ISSUES Maintaining dignity of Early-onset dementia individual; Being good advocate; Transitions between levels of illness; Help from outside advocate; Adult Daycare helpful for caregiver but person with Early-onset dementia unhappy going; Finding placement difficult POSITIVES GAINED from CAREGIVING & POSTTRAUMATIC GROWTH Discovered true friends; Recognized own strengths; Improved self-care; Got closer to individual; Increased empathy for others; Appreciated “little things;” Increased or renewed spiritual involvement; Overcame personal deficits SOURCES of SUPPORT Friends; Family; Humor; Agencies; Professional case managers; Geriatrician; Counseling; Long-term care insurance BARRIERS to CAREGIVING Financial issues (loss of income, use of savings, care costs); Loss of social supports; Family difficulties; Problems with professionals (not being believed, no guidance); Locating resources; Lack of appropriate resources QUANTITATIVE RESULTS IES-R total score mean: 34 (range 0-72) (possible range 0-88) OLQ total score mean: (range ) (possible range ) PTG total score mean: (range11-92) (possible range 0-105) Negative correlation between OLQ items and overall IES-R; Participants reported Posttraumatic growth in most cases; Unexpected finding - Anticipatory trauma (avoidance of dealing with issues that caregivers knew to be important and avoidance of thinking about what the future held); Helplessness negatively correlated with manageability, meaningfulness, and the total score on the Orientation to Life Questionnaire as feeling helpless detracts from a sense of competence; Experiencing horrible events leads to truly understand what is happening She was diagnosed at 55 He was diagnosed at 47 RESULTS