Facesof the Caregiver

J. StevenFulks, Ph.D. GerontologyProgram BartonCollege

Opening statement: I have no new revelations to report on; no new knowledge to relay to you I will in the next few minutes remind you of the scope of this complex issue, and relay some insights which may be new to you. Story of male relative moving into our home somewhat unexpectedly similarities and differences outlined, and the key difference being the prognosis: the future Caregiving is as old as the family. In the past the individual was cared for by the family largely because individuals did not live as long. In 1900 life expectancy was 47 - half of all individuals born died by the time they reached their late 40's. Through many changes individuals are living on average to their mid to late 70's. Caregiving as a function of the family has changed dramatically since the early part of our century. Why it is different today. Why is it changing? 1. Chronicvs. Acuteillness . Conditions which once more often than not proved fatal are now survivable, though in many cases the individual may need support, perhaps for the rest of their life. 2. Caregivingtodayis longerandmoreintensethan in the past. An individual aged 65 can expect to spend 10-20% of their remaining life dependent upon someone else; someone aged 85 can expect to spend 50% of their remaining life dependent upon someone else. 3. Dementiais morecommontoday as a caregiving issue. 33% of all families will provide care for an Alzheimers Disease patient at some time. 4. Caregiverstodayare older . Consider if you are caring for an older parent who is in their 80's. Odds are you are in your 50's or 60's yourself, and beginning to deal with the physical challenges of normal aging yourself. Issues compounding the complexity of caregiving: 15% of older individuals have children over the age of 65. As individuals age, the likelihood of having a surviving sibling to assist in the caregiving role decreases. This translates to a greater level of burden.

Grandparents today are primary caregivers to more than 3 million children, and provide day-care for an additional 2 million children. Grandparents may not have legal rights and access to supportive services to assist in raising their grandchildren. Grandparents still serve as the family watchdog , intervening when necessary. Adult children with disabilities survive and live long lives today as opposed to years gone by. Care for these individuals can be difficult, and hence represents a concern as their parents age. Another concern: who will continue the care following the death of the parents? Individual Differences. Some individuals in their late 90's are in better physical condition than their young-old children. Fear of having your children place you in a Long-term care facility superseded by fear of placing your child in such a facility.

Perception is a Key to Successful Caregiving. How caregiving impacts the caregiver is of critical importance. There are both negative and positive outcomes to caregiving. What seems to matter most is the individuals attitude toward their situation. some of the aspects of caregiving encountered include: problems/ negativeaspects _ _ _ _ _ 69% of family caregivers consider frustration their most frequent emotion 65% do not receive help from family or friends 40% report loss of leisure time, feelings of isolation, and change in family roles to be the most burdensome aspects of caregiving 49% report suffering from prolonged depression because of their caregiving duties 30% feel taken for granted by their loved ones

benefits/ positiveaspects There are several benefits derived from the caregiving experience. _ _ _ _ _ 46% reported feeling appreciated for their caregiving tasks. Adult children who provided the most care to older parents reported the highest stress, but also the highest satisfaction. A sense of meaning derived from caregiving. Caregiving can bring the family closer together. Sharing of family stories and time shared which would not otherwise have happened.

The caregiver may neglect their family by virtue of taking on the new responsibility. This is especially true for the women in the middle who are caring for their children in addition to caring for an older relative. To survive this challenge, caregivers can: _ _ acknowledge this change and how it is impacting the family be selfish

Considerhowcaregivingimpactsthe familyas a whole . Both positive and negative consequences. It impacts different family members in different ways. Consider: the wife/mother; husband/father; adolescent child; younger child; person being cared for. PotentialProblems : finances living space caregiving chores family dynamics

vacations friends visiting

Different family caregivers are impacted in different ways, but their life is changed. For each there are problems and benefits to the caregiving situation. PotentialBenefits : family history meaning family cohesion

finances baby-sitting

Caregiving:fromwhichdirection? In discussing the Faces of Caregiving, we must consider caregiving in non-traditional ramifications. These include: Centenarian caregiver Caring for Spouse Caring for a Sibling Elder parent to elder child Elder parent to grandchild Elder parent to middle aged child

53% of adult children are not involved in exchanges with their parents. 19% are receivers only; 11% in strong exchange networks Althoughless thanhalf of adult childrenreceiveassistance,mostnamedtheir parentsas potential sourcesof help in timesof need. Whatkindof assistanceis provided?

17% receive household assistance / 32% give household assistance 27% receive advice and emotional support from parents 25% give advice and emotional support to parents 17% receive financial support from their parents / 4% give financial support to parents 13% receive child care assistance from their parents

Thereare six majordilemmasfacingfamiliestoday. These are: 1. Changesin livingarrangements , what should we do when the older individual has trouble living alone anymore. Dad has fallen, how do I get help when he refuses it? As independent as possible, while maintaining safety. May see all the benefits of congregate housing or CCRC, but not understand the emotional ties preventing the move. Must understand the reasons underlying the resistance. 2. Makinga decisionaboutLTC . The decision to move a person to LTC is one of the most difficult - guilt, sadness, anxiety, etc. even when the older person is cooperative and making the decision themselves. Even when an MD makes the strong suggestion. Statistics show more people will face the LTC issue than ever before. Each of 4 parents lives to 65, 90% chance at least one of them will need LTC. married couple lives to 65, 70% chance one of them they will need LTC. 40% of all 65+ will need LTC, more than 50% will be there more than a year.

LTC gets bad rap, Guilt Family traditions and values, care at home. Meaning of LTC - abandonment; she took care of me when I was young. Promises made in the past.

LTC can be a very positive experience for the older person, and family can be stronger as a result. Time spent together would now be social and recreational instead of caregiver tasks; Gets rid of some of the physical and emotional exhaustion; Family members still feel stress and guilt even after LTC - little or no change in overall stress - just different sources.

3. Financesandlegal decisions ; finance LTC, manage money, find resources, planning for decline & potential incapacity. What if outlive savings? When person is diagnosed as AD, must make plans swiftly. Options decline with the progression of the disease. Power of attorney or conservatorship very stressful and difficult. Minimal assistance is often what is needed; help families to assist instead of taking over. Least intrusive option is the goal.

4. Endof life healthcaredecisions . What are the elders wishes, is there disagreement among the children/siblings/spouse? Medical directives written in advance can assist family members in difficult situations. Funeral arrangements: funerals are for those left behind. 5. Driving . Most difficult decision not moving to LTC, being dependent on others, but giving up the drivers license. Most difficult even if it is the older persons decision. Change driving strategies and style to maintain independence. A care means more than transportation. Driving symbolizes a lot. Family may not be aware of the difficulty the older person is having, dad was able to drive OK because mom was watching and coaching. Not uncommon to be reluctant to take action. Studies show AD patients rate themselves as competent drivers. Family members find older person more likely to listen to MD or other professionals. Family members should be ready to acknowledge and help with the LOSS of not being able to drive anymore. Acknowledge this loss, and mourn. Giving up the license does not necessarily mean giving up the car. Keep the car in the garage or driveway as a symbol, and also to have the older person driven around in.

6. Familycaregiving . Great amount of research. Providing care is becoming a normative experience. 70% provided by women. Do not limit it to a WOMENs ISSUE, 30% are males, other family members are providing input. 25% are spouses, 33% are aged 65+. Caregiving can evolve, or come suddenly; what we find is the family adjusts better with a gradual increase rather than sudden. Prolonged caregiving = more stressful. With AD, 8-10 years common, could be 20 years or longer. 60% of older care receivers have at least one secondary caregiver. Providing caregiving is a more stressful situation if cognitive decline rather than physical. Caregiving becomes more difficult as dementia progresses. Thank-yous absent for dementia. Loss of the person, personality of person is gone; tending a shell of what they were; more families faced with long-distance caregiving than ever before.

Caregiver involves many changes to the person and family; article October 1995 family relations. If the care receiver exhibits behavior problems = higher stress. Poor relationship prior to caregiving = higher stress. Need for caregiving can threaten relationship. Instrumental assistance may be easier than emotional. Difficult people make for difficult individuals to care for. Could be you never could please the person, just seems more prominent now. Loss of social life = high risk for depression.

High anxiety, physical and mental health related to their perception of the situation that the amount of actual change or disruption. If a stroke not perceived as disruptive, stress lower. Meaning the caregiver ascribes is very important. Copingstyle andsocial supportimportantmediators ; Not the number of individuals available, but perception of the support provided. Direct style of coping most beneficial. Family disagreements detrimental.

Supports available: information and I&R are best. Non-intrusive nature of assistance, especially labeling it education is beneficial. Caregiver attitudes limit the assistance received. Emotions, guilt, inadequacy, anger. Empower caregivers, increase their confidence; often caregivers feel powerless = great impact on physical and emotional health. Higher preparedness = less strain. Knowledge alone does not guarantee a difference. Belief is a powerfulpredictor .