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Kathie Bickerstaff, MSN, APRN-NP, BCUNMC College of NursingFAMILY CAREGIVING ISSUES1ObjectivesDefine caregivingProvide demographics related to caregivingIdentify emotional, mental and physical consequences associated with caregivingTo present various resources available Identify role of bereavement in the caregiver dynamicTo present tools appropriate for the Advance Practice Gerontological Nurse role2Caregiving DefinedAccording to AARP and NAC in 2004typical caregiver is a 46 y/o woman who has at least some college experience and provides more than 20 hrs of care each week to her mother.

Schumacher, K, Beck, C., & Marren, J. Family caregivers. AJN 2006; 106 (8):40-49.

Some still consider caregiving as womens work but that stigma is breaking down. 13% of CG are > 65 y/o. Also have the sandwich generation. The older caregivers have chronic conditions themselves. Same study found that 17% of white households and 15% black have at least one person providing care to someone > 50 y/o. Asisn Am are at 14% and Hispanic Am at 13%. In some cultures is more normal to provide care for elders. 3Family CaregivingBackbone of caregiving for older persons in the US are family membersBy 2030 will have 17% more elderly than in 1999Expect up to a 33% increased change in dementia from 2000-2025

As reported in the Journal of Community Health Nursing (1999), in a study by Faison, Faria, & Frank.Family members provide the bulk of the care given to elderly persons in our country today. This is for both physically and mentally ill persons. Ten years ago about 20% of older Americans needed help with bathing and getting in and out of bed. With the over 60 population expected to grow 17% by 2030 it will greatly increase the number of elderly needing assistance. Contrary to what many people think, only about 5% of elderly persons live in nursing homes. Many see having to use LTC as a failure on their part and choose to take on the role of caretaker with its many challenges. Challenges include financial, social, physical, emotional, and spiritual. The effect on the family member has been called caregiver burden, strain, role fatigue, role overload, or caregiver stress. In spite of this, most family caregivers wish to continue in this role and inability is seen as failure and leads to feeling of guilt and helplessness.

Was estimated in 2000 the economic value of informal caregiving in this country was $257 billion which was increase from $196 billion in 1997. Today the cost is $172 billion in actual costs and the economic value of informal care almost $795 billion in 2009 for dementia care alone. There are 10.9 million unpaid caregivers in the US. In NE projections for 2010 are 37,000 persons with dementia and in Iowa 69,000. By 2025 those numbers will have risen to 44,000 and 77,000 respectively. That will be a 33% and 18% change since 2000. And this is just from dementia illnesses. These figures can be found on the www.alz.org site.4For Whom Do Caregivers Care*

*From Newsweek June 18, 2007You can see from this graphic who the persons are being cared for in the home. An estimated 73% of the informal caregivers are female, with 12% of them over the age of 65 and wives of elderly, functionally impaired men. Daughters are most often the primary caregiver and they often are married, working and caring for their own family. According to a 2009 article in Jour of Psychosocial Nrsg, 7 out of 10 adult children caregivers are daughters. Others include d-i-l, sons, husbands, siblings, nieces, friends and neighbors. 5Caregiver BurdenLiving longer >65Men 17 yrsWomen 20 yrsSandwich generationOverwhelmed with responsibilitiesHigh cost of care$5,500 out of pocket costHigh cost in health problemsTwice rate of physical, high rate MH problemsTimeUnable to enjoy experience and rejuvenate

Cangelosi, P. Caregiver burden or caregiver gain: respite for family caregivers. JPN. 2009; 47(9):19-22.

Those who would not have survived a decade ago are living to be the oldest, old. 90s are not uncommon. Today a man who reaches 65 can expect to live 17 more years and a woman who reaches that age can expect to live 20 more years. Unfortunately the risk of Alzheimers and other dementing illnesses increase with age. We are able to extend the life of those living with heart and lung disease and some cancers now become chronic. Those who cannot live on their own are most often cared for by daughters.remember< 5% are in institutions.

Caregivers report higher levels of hrt disease, arthritis, diabetes than non caregivers. Depression, sleep disorders and even death have been linked to caregiver strain. Reason for new initiatives in health care to include options for respitetalk about later. Right now that are so many barriers because of the financial burden6We Never Know What the Future HoldsGlenn and Gretchen Bickerstaff on their 50th anniversary. Even though my father-inlaw did not have dementia or other serious mental health issues, Gretchen became his caregiver as his health declined about 3 years after this photo was taken. For the last 2 years of his life she primarily did all of the chores involved in the upkeep of the home they had built and moved into when they were married. As his chronic prostate cancer progressed he had signs of depression and apathy in his final months. He passed away after 55 years of marriage. Glenns only sibling who lived past early adulthood, an older sister, spent the last 12 years of her life in a LTC facility as Alzheimers Dementia took its toll on her. She and her husband had no children.

7Caregiver BurdenCaregivers of dementia patients have documented increase in distress and decrease in mental health and well-being.

Scholzel-Dorenvos, C., Draskovic, I., Vernooij-Dassen, M., & Rikkert, M. Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Dis Assoc Disord. 2009; 23:171-177

Developmental burden vs objective burden

Raccichinni, A., Castellani, S, Civerchis, P, Fioravanti, P & Scarpino, O. The caregivers burden of Alzheimers patients: differences between live-in and non live-in. Am J Alz Dis. 2009; 24(5):377-383.#1 This study from the Netherlands related caregiver status just to patients cognitive status, and not behavioral or functional status.QoL is lower in caregivers than that of healthy, elderly non-caregivers who are even older.Caregivers of non-demented patients have higher QoLCaregivers of early onset dementia have higher caregiver strain. Domains of the Condition of the partner, Marriage, and Family were seen as strongly affecting QoL with slight differences between male and female caregivers. Was thought that negative effects of the partners condition could be compensated by positive functioning family and adaptations in the marital relationship, although that was not specified. Now, your book does cite some earlier studies with different outcomes.#2 Study done in Italy analyzed correlation between Caregiver Burden Inventory (CBI) and the live-in/non-live-in caregiver status, and between the objective burden which is the cognitive deterioration, the functional ability and the psychic and behavioral disorders. Live-in caused bigger burden related to the developmental burden or the feelings by the caregiver of being out of sync with expectations of others and the physical burden related to tiredness and somatic problems. Objective burden is affected by IADL and ADL compromise which increases amount of time caregivers devote to care. Live-ins have higher correlation with burden than non-live-in. Data suggested a weak correlation between burden and cognitive impairment. Female caregivers living with pt. seem to show more emotional burden and that may be related to coping strategies. Women tend to use more emotional focused strategies while men use solution focused strategies. Psycho-ed for the caregivers.important to remember that it needs to be appropriate and accessible for/to the caregiver. 8Caregiver Burden Caregivers of depressed elders develop major depression themselves that lasts 6 months or more

McCusker,J., Latimer, E., Cole, M., Ciampi, A, & Sewitch, M. Major depression among medically ill elders contributes to sustained poor mental health in their informal caregivers. Age and Ageing 2007; 36(4): 400-406

Competing role responsibilities are an important dynamic in factoring the stress burden.

Houde, S. Family caregiving: in Geropsychiatric and Mental Health Nursing. Eds Melillo, K & Houde, S. 2005, Jones & Bartlett Pubs, Barlett, MA

#1 Mental health in female caregivers of depressed persons was poorer at follow-up than that of caregivers for persons without depression. Female caregivers had poorer mental health than male caregivers. This is even after adjustment for baseline MH and the physical health of the one for whom they are caring. Mean age of patients was 79.3 and mean age of caregivers was 61. Caregiving for depressed persons is stressful and this particular study showed that even when the depression of the patient improved there was no decrease in caregiver burden. They did not find a similar result on the physical health of the caregivers.sample size was small. Concluded that the mental health of female caregivers needs to be addressed at the time of a medical hospitalization of an older depressed person. Particularly female caregivers.

#2 Excessive demand creates more stress. Intimacy and companionship are compromised. Decrease in trust may occur due to the illness. On one hand there may be bitterness and anger if the relationship had not been a good one vs. the need to provide care. Social isolation and loneliness as the disease progresses. Wives more often to verbalize the negative effects of caring for their husbands and women less likely to take time for themselves for hobbies, etc. Lack of support or the feeling of such, also increases the burden. Disruptive behaviors coupled with decreased functional ability all increases the burden.

Cultural differences have also been noted in that white caregivers report more stress and fewer rewards than black caregivers and these differences may be accounted for in the role of religion and also the cultural differences in support systems. 9CaregivingA spiritual practice as one human being dares to enter into relationship and service for the benefit of another Mary Pauluk, ChaplainSt. John Lutheran Home, Springfield, MN

Weve been called to tend to others, not to martyr ourselves in the process.Caregiving is a truly spiritual practice, a nonlinear path with heart.we are asked to trust life in a way we never thought possible. Beth Witrogen McLeod, author of And Thou Shalt Honor: The Caregivers Companion. 10Assessment of Caregiver NeedAssessment of caregiver as well as older person with care needsPOC works for both partiesCoordination of formal services by the gero-psych nurseOngoing assessment of the caregiverEncouraging the caregiver to address her/his own health promotion and health maintenance needs

Houde, S. Family caregiving: in Geropsychiatric and Mental Health Nursing. Eds Melillo, K & Houde, S. 2005, Jones & Bartlett Pubs, Barlett, MAMany instruments to help assess the caregiver strain. Your book has the Caregiver Well-Being Scale on pp 288-289. This address basic human needs as well as ADLs. Is an instrument to help facilitate communication with the caregiver and help the nurse in screening and planning interventions. Others available are the Modified Caregiver Strain Index (Modified CSI)

Interventions to promote self-care activities are focused on physical activity and exercise, healthy eating and sleep habits, adherence with their own medication regimes and health care maintenance, and maintaining a strong social support network. Conflicting info in studies re: caregivers self-care activities and some actually have found that health promoting behaviors can have a positive effect on caregiver stress. Much depends upon how the caregiver sees themself in the role 11Caregiver Stress CheckDo you regularly..Feel like you have to do it all yourself, and that you should be doing more Withdraw from family, friends and activities that you used to enjoyWorry that the person you care for is safe Feel anxious about money and healthcare decisionsDeny the impact of the disease and its effects on your family Feel grief or sadness that your relationship with the person isn't what it used to be Get frustrated and angry when the person with dementia continually repeats things and doesn't seem to listen Have health problems that are taking a toll on you mentally and physically Yes No Yes No Yes No Yes No Yes No Yes No Yes No Yes No Quick and easy assessment tool that you can use with your caregivers to help identify needs 12Symptoms of Caregiver StressDenialI know mom is going to get betterAngerIf he asks me that question one more time Ill screamSocial withdrawalI dont care about getting together with the neighbors anymoreAnxietyWhat happens when he needs more care than I can provide?DepressionI dont care anymore13Symptoms of Caregiver StressExhaustionIm too tired for thisSleeplessnessWhat if she wanders out of the house or falls and hurts herself.IrritabilityLeave me alone!Lack of concentrationI was so busy, I forgot we had an appointmentHealth problemsI cant remember the last time I felt good14Put YOUR Oxygen Mask on FIRST

Always remember to tell your caregivers that they must take care of themselves if they wish to be of any good to their loved one. 15Caregiver Needs in Dementia CareEarly-Mild StageInsight to help loved one feel productivePersonal support from family and friendsCommunity resourcesFriends to bring humorSomeone to pick up some of the dutiesSomeone to help celebrate life with the person who has the disease as well the extended family

Adapted from Alzheimers Disease: the Dignity Within, A handbook for Caregivers, Family ,and Friends, Callone, P. R., Vasiloff, B.C., Kudlacek, C., Manternach, J., & Brumback, R. A., 2006

16Caregiver Needs in Dementia CareModerate StageTake care of self---socially, emotionally, spirituallySomewhere to go for fun and relaxationSomeone to distract the provider from the caregiver dutiesKeeping up with medical and dental examsTime set aside for reflection, prayer and funReview info on how the disease affects the brainDistinguish fact from feeling when interacting with loved one

Adapted from Alzheimers Disease: the Dignity Within, A handbook for Caregivers, Family ,and Friends, Callone et al. 200617Caregiver Needs in Dementia CareSevere StageSomeone to listen without judgment or trying to problem-solvePersons who understand the needs of the caregiverOutlets for humor and enjoyment of life away from responsibilities of care-givingKindness and compassionSupport and reinforcement for the tough decisions that have to be madeWorkplace understanding when caregiver is distractedEncouragement to take time off to have the energy to manage responsibilities for all the roles that evolve.

Adapted from Alzheimers Disease: the Dignity Within, A handbook for Caregivers, Family ,and Friends, Callone et al. 2006

18Caregiver Needs in Delirium CareTo be able to identify difference from dementiaTo understand the need to immediately access medical/nursing intervention and transport the patient if necessaryTo use techniques that validate and soothe patient Maintain patienceGet support-call the nurseWe know that delirium has a sudden onset and may be precipitated by any number of factors. They may show signs of acute confusion, disorientation, hallucinations, sleepiness, fluctuating levels of consciousness, incoherent speech. May have a worsening of other problems of a physical nature. Could be complications of an overriding serious medical condition. Medication overdose or interaction. Make sure that the caregiver does not take these to be a worsening of the dementia. Underlying causes of the delirium can kill19Caregiver Needs in DepressionCaregivers of elderly disabled are twice as likely to develop depressionPredisposed if care recipient has behavioral problems/limited helpSupport after placement in LTC importantIncreased vulnerability in some individuals

Alexopoulos,G. Depression in the elderly. The Lancet,2005; 356:1961-1970Stigma by association part of caregiver burden for those with brain disordersZausniewski, J. Bekhet, A, & Suresky, M.J. Factors associated with perceived burden, resourcefulness, and quality of life in female family members of adults with serious illness. Jour APNA, 2008; 14(2), 125-133. #1 Recurrence within three years when maintained on placebo. Need to maintain on tx for at least one year and for three years if had have 3 or more episodes in lifetime. Limited help make situ more difficult caregivers develop depr after placement of loved one.remains unchanged in women, worsen in men. We encourage our caregivers to always do something good for themselves, and that can run the gammet of ones imagination. If we allow our caregivers to believe that just getting lifes necessities done, they still may not be taking care of themselves. Pessimistic thinking in the elderly predicts suicidal ideation a year later. #2 Changes in routines, strained relationships, financial difficulties, decrease opportunities for leisure, exhaustion all contribute to what has been called stigma by association. Females perceive themselves as having more burden and judge QOL less than average population.

Also important that the caregiver does not fall into the false perception of of course they are depressed, wouldnt you be if. Depression is not a normal state, either for the person with an illness or for the caregiver. As you learned in your other lectures, there are many ways to treat depression and allowing it to go untreated can lead to much greater consequences. 20Grief and the CaregiverConceptsLossLack of what was there beforeSorrowFeelings of grief occurring as result of loss of normal lifestyleGriefBehavioral, social, physical, and psychological response to loss

According to your text: Different in grief responses between groups of family members. Whereas the spouse may be realistic about the outcome more often tend to see denial in the adult-child caregivers. Caregivers mourn the loss of companionship and the children the loss of their freedom. This may turn to anger later as their lives are changed. May have guilt over escapist thoughts. For spouses can have high levels of grief and anger upon placementfinal loss of relationship whereas adult children may have a sense of relief.

Book has the Marwill-Meuser Caregiver Grief Inventory on pp 293-295. Take a look at this. The scoring measures Personal Sacrific Burden, Heartfelt Sadness and Longing, and Worry and Felt Isolation. Those who score high in the PSF and WFL may respond better to cognitive-behavioral theropy and those with high HSL may respond to supportive interventions like empathic listening.21The Grieving Process

Lengthy and difficult process that can span yearsTwo phases of bereavement called dual dying: the time of care giving and the time after deathLengthy process can cause financial, emotional and physical problems for the familyHospice offers a minimum of one yr. bereavement services which may begin before pts. deathMultiple focusEducation re: projected course of illnessAcknowledgment of the grief/support in grievingAdvanced planning around the anticipated lossAddressing guilt often expressed by caregivers

Aupperle (04) in nursing research described the grieving process for the caregiver as a dual dying. We see this so often in our support groups. Infact, for many the worst time of grieving is actually before that actual death event. Do not forget about hospice and palliative care when provided support for your caregivers. These programs address the issues we discussed earlier. 22Supportive InterventionsEducational programsSkills trainingTechnologySeveral websites listed in text p 299Research studiesSupport groupsRespite services http://www.alz.org/national/documents/brochure-respitecareguide.pdf

Important to assess to know what is needed. We know that women need more support than men based on the levels of depression, anxiety and burden they have. Understand difference between live-in and non-live-in caregivers needs, spousal and children caregivers.

What type of skills are needed..basic caregiving skills, communication skills, assertiveness training, computer skills in order to access support in that manner. That brings us to technology. There are so many things avaiable today that one could spend all of their time looking for help on the internet. Need to make sure that you have your families going to reliable places. Chat rooms are available but the caregivers need to understand that they are only as good as the people who are using them.still can be a wonderful source of support and companionship. Can help to lessen the feelings of loneliness and isolation.

Respite services can be anything from a day care program, in home care for a few hours a week, to a weekend or entire week stay in a LTC facility enabling the caregiver or family to take a vacation, attend a wedding or a funeral out of town. Local Alzhiemers Associations often have grant monies available for these type of respite. Want to discuss day care programs a bit more. There may also be a local Respite Resource Center as we have in Omaha. Want to mention ADS-Plus program for nursing homes (Cangelosi 09) discusses a program known as Adult Day Services Plus (ADS-Plus) in which the services are offered on an intermittant, regular basis to provide care mangement and support through both face-to-face- and telephone contact. Some research has shown that enrollment in day programs does not delay or prevent NH placement but persons with demntia enrolled in a ADS-Plus Program did reveal fewer nursing home placements than those enrolled in a typical day care program. Was not compared against those using no adult day services. Funding continues to be a big issue. 23Educational ProgramsBenefit of caregiver education programsEducational not only regarding disease but also:Controlling stress and tensionStrategies for handling behavioral problemsStrategies to increase life satisfactionAverage time in medical care for both caregiver and patient decreased over time..lasted at least 6 mos post interventionResults supported effectivenss in psyco-ed for reduction in burden, improved QOL in both health and psychiatric morbidity of caregivers.

Martin-Carrasco, M., Martin, M., Valero, C., Millam, P., Garcia, C., Montalbano, S., Vazquez, A.L., Piris, S., & Vilonova. Effectivenss of a psychoeducational intervention program in the reduction of acaregiver burden in alzheimers disease patients caregivers. Int J Geriatr Psychiatry 2009; 24: 489-499.Going along with the ADS-Plus program success are the results of a study in southern Europe. This study evaluated the efficacy of a structured psycho-ed psychosocial intervention program on caregiver burden . Intervention was providing general info on progression of the disease both in person and over the phone on demand, info leaflets about AD and info about resources directed at caregivers in the community. Had 8 intervention group in 90 min sessions , 1-2 week intervals over 4 month period. Had elements of CBT as well as information giving. Used Zarit Caregiver Burden Interview, the Health Survey Questionnaire and the General Health Questionnaire. Showed significant difference in all three of the tools used. So we have our EBP here. 24How to manage stress10 ways to be a healthier caregiver25 Understand whats going on as early as possible

Know community resources available

Become an educated caregiver

Get help

Take Care of Yourself

#1 Symptoms of Alzheimers may appear gradually. Easy to explain away behaviors when physically healthy. Consult a doctor when changes in: Memory, Mood, BehaviorMay be treatable#2 Contact your local Alzheimers Association ..Contact your local Office on Aging-ENO :adult day programs, in-home assistance, case management, visiting nurse, meal delivery #3 Learn new care-giving skills. Attend programs to better understand and cope with Behavior changes, Personality changes. Become familiar with the internet www.alz.org, www.midlandsalz.org#4 Exhaustion takes overSeek support of family, friends and community resources. Tell others exactly what they can do: Other sources are: 24/7 Helpline, online message boards, Local support groups are good sources of comfort. Seek professional help if stress becomes overwhelming.#5 Diet, Exercise, Rest, Have fun

26Manage your level of stress

Accept changes as they occur

Make legal and financial plans

Give yourself credit, not guilt

Visit your doctor regularly

#6 Stress causes physical problems of elevated BP, stomach distress, aches and pains, changes in behavior, irritability, change in appetite, depression: Learn relaxation techniques such as mental imagery, progressive muscle relaxation, meditation, and yoga#7 Needs of the person change with the disease and the care may stretch beyond your ability to provide on your own. Become aware of community resources such as home care, day program, assisted living, residential care, and the support/assistance of those around you may change#8 Plan ahead: Consult a professional for Advanced directives, Estate planning, Housing issues, LTC planning. Involve the person with dementia as well as family members when possible.#9 The care you provide DOES make a difference. You are doing the best you can. Care needs change as the disease progresses and you cant promise anything. You can make sure that your loved one is well cared for and safe.#10 Take time to care for yourself and listen to what your body says. Pay attention to stress, exhaustion, sleeplessness, changes in appetite, changes in behavior. Ignoring signs may lead to serious health problems

27Referral to Support GroupsAn Alzheimers Support is a small discussion group of caregivers, family, and friends of individuals with Alzheimers disease and related dementiasGo to Alzheimers Association website for a complete list of support groups anywhere in the countryCheck with the LTC facilities or Senior Centers in your area to see if they offer any type of caregivers support groups that are open to caregivers of any type of long term problems

28Support Groups Are. A place: that is non-threatening and non-judgmental to express feelingsto talk about needs and concerns A forum for: exchanging information getting practical ideaslearning about local resourcesdeveloping new friendships A refuge with: emotional supportpeople who will listen and understand a feeling of belonging

29Other HelpLotsa Helping Hands

Online calendar helps caregivers organize helpers

Do you find it hard to ask others for help? Do you know what to tell people who ask What can I do to help? To make asking for or receiving help easier, the Alzheimer's Association has partnered with Lotsa Helping Hands.

Lotsa Helping Hands is a free, personalized online calendar to organize family and friends who want to pitch in. Helpers can sign up for specific tasks, such as preparing meals, providing rides, running errands or keeping your loved one company.They're reminded of upcoming tasks through e-mails automatically sent out by the calendar service.

Go to alz.org..click on WE CAN HELP on the toolbar.then Lotsa Helping hands on the left side.

30Helpful Websiteswww.alz.orgwww.alz.org/midlandswww.alz.org/factshttp://www.helpguide.org/elder/alzheimers-disease-dementis-support-caregiver.htm#protectingHelpline number, 1.800.272.3900, is available 24 hours a day. seven days a week, and 365 days a year.For support group information from Midlands Chapter, please contactbetty.chin@midlandsalz.org or 402.502.4300.For Safe Return, respite, speakers, health fairs, grant information please contact clayton.freeman@midlandsalz.orgor 402.502.4300

31Resources for CaregiversAmerican Association of Homes and Services for the Aginghttp://www.aahsa.orgFamily Caregiver Alliancehttp://www.caregiver.orgNational Caregivers Libraryhttp://www.caregiverslibrary.orgStrength for Caringhttp://www.strengthforcaring.comWell Spouse Associationhttp://www.wellspouse.org/home.html32Reference BooksTheres Still a Person in There. Michael Castleman, Dolores Gallagher-Thompson, & Matthew Naythons, 1999. G. P. Putnams Sons

Alzheimers Disease, The Dignity Within: A Handbook for Caregivers, Family and Friends. Patricia Callone, Barbara Vasiloff, Connie Kudlacek, Janaan Manternach, & Roger Brumback. 2006. www.demosmedpub.com

My Mothers Descent into Alzheimers: Death in Slow Motion. Eleanor Cooney, 2003. HarperCollins Publishers.

Measure of the Heart, Mary Ellen Geist, 2008. Springboard Press (forward by Dr. Oliver Sachs)

The 36-Hour Day, Nancy Mace & Peter Rabins, 1999. Johns Hopkins University Press

The Alzheimers healthcare Handbook, Mary Mittelman & Cynthia Epstein,2003. Marlowe & Co.

Coping with Alzheimers: A Caregivers Emotional Survival Guide, Rose Oliver & Frances Bock, 1987. Dodd, Mead & Co.

33Prayer for LaughterDear Lord, The day can be challenging, often our problems overwhelm our joy.Today, help me to see the moments that lighten my heartHelp me to laugh more and fret less.May the radiance and joy of your love shine in me.Amen34