Caring+for+someone+with+Dementia-Alzheimers---Jessica+Paige+Hood

= **__Caregivers of patients diagnosed with Alzheimer's and Dementia.__** = = = ====Most of the time when people think of Alzheimer's and Dementia related diagnoses, the patient with this diagnosis is who is considered. The caregivers of these patients are also very important as they provide the daily care needed for these patients in their transitions. Many of the services provided by secondary sources are focused on the patient rather than the caregiver, therefore the caregiver's health (physically and mentally) suffers. I’m interested in this population because of the caregivers I have met through my placement with hospice. ====



====“In a nutshell, dementia is a symptom, and AD is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties and that these problems are severe enough to get in the way of daily living....” ====

** Alzheimer’s **can be defined as, “a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes” (Alzheimer's Foundation of America). Alzheimer’s is the most common cause of dementia (Alzheimer's Foundation of America).

====** Dementia ** can be defined as, “a general term that describes a group of symptoms-such as loss of memory, judgment, language, complex motor skills, and other intellectual function-caused by the permanent damage or death of the brain's nerve cells, or neurons” (Alzheimer's Foundation of America). ====



====Polk states, "Alzheimer's disease (AD) is marked by uncertainty." On the premisis that one can never fully predict the behaviors that an Alzheimer patient will elicit come the next day, the next week, or the next month, this in itself can bring frustration and negative emotions. "Because cognitive impairment, depression, and mood changes characterize AD, the role of the caregiver changes as the needs of the person with AD change" (Polk, 2005). Considering the uncertainty of the future of a patient with AD, there's no questioning the frustration a caregiver feels. ====

====Six of the most stressful behaviors according to caregivers were identified as, "dangerous behavior, getting lost, embarrassing behavior, waking people at night, agitation and suspicious/accusative behavior" (Ford, G., Goode, K., Barrett, J., Harrell, L., & Haley, W., 1997). One of the most researched problems associated with caregiving is caregiver burden (Werner, P., Mittleman, M., Goldstein, D., Heinik, J., 2012). "Many factors influence the perceived burden of caring for a relative with AD. These factors include characteristics of the caregiver, characteristics of the person with dementia, and characteristics of the caregiving context" (Werner et al., 2012). ====

====Also related to caregiver burden is the stigma associated with having a family member diagnosed with AD. It is a proven fact that this stigma often prevents caregivers from seeking the needed help which would lessen this burden (Werner et al., 2012). It has been speculated that if this stigma keeps caregivers from seeking out the needed resources to lower their burden there may be more negative effects on the caregivers such as, "depression and physical illness, as well as premature nursing home placement for their relatives with dementia" (Werner et al., 2012). As with most caregivers, support plays a huge role in their perception of the situation. Therefore, the more support perceived, the less caregiver burden and burnout felt (Hayslip, B., Han, G., & Anderson, C., 2008). ====

__Losses Related to this Population:__
**__Primary Loss:__ **The eventual loss of their loved ones mental capacity, and later the physical loss of their loved one. **__Secondary Losses:__ ** Loss of friends Loss of financial security   Loss of the relationship with the person the caregiver once knew   Loss of time for normal household duties  <span style="color: #000000; display: block; font-family: georgia,serif; text-align: center;"> Loss of previous enjoyable hobbies  <span style="color: #000000; display: block; font-family: georgia,serif; text-align: center;"> Change in assumptive universe  <span style="color: #000000; display: block; font-family: georgia,serif; text-align: center;"> Loss of choice in regards to how time is spent <span style="display: block; font-family: georgia,serif; text-align: center;">

__<span style="font-family: Georgia,serif;">** S ** ____<span style="font-family: Georgia,serif;">** tressors ** __

 * || <span style="display: block; font-family: Georgia,serif; text-align: center;">__**Stressor**__ || <span style="display: block; font-family: Georgia,serif; text-align: center;">__**Process**__ ||
 * <span style="font-family: Georgia,serif;">__** Grief Oriented **__ || # <span style="font-family: Georgia,serif;">Depression
 * 1) <span style="font-family: Georgia,serif;">Feelings of Helplessness
 * 2) <span style="font-family: Georgia,serif;">Isolation
 * 3) <span style="font-family: Georgia,serif;">Not taking appropriate care of themselves because of the care provided to the patient
 * 4) <span style="font-family: Georgia,serif;">Fear || # ====<span style="font-family: Georgia,serif;">Refusing to complete certain documentation with the patient (Advanced Care Directives, Funeral Arrangements) ====
 * 5) ====<span style="font-family: Georgia,serif;">Not completing normal activities such as grocery shopping when able ====
 * 6) ====<span style="font-family: Georgia,serif;">Not spending time with family or attending family events ====
 * 7) ====<span style="font-family: Georgia,serif;">Not taking advantage of the respite care options offered. ====
 * 8) <span style="font-family: Georgia,serif;">Not attending one's own doctor's appointments ||
 * __**<span style="display: block; font-family: Georgia,serif; text-align: center;">Life Oriented **__ || # ====<span style="font-family: Georgia,serif;">Having to complete funeral arrangements and Advanced Care Directives. ====
 * 1) ====<span style="font-family: Georgia,serif;">Searching for extra care (Hospice, Certified Nursing Assistants). ====
 * 2) ====<span style="font-family: Georgia,serif;">Learning to complete self-care tasks for the patient ====
 * 3) ====<span style="font-family: Georgia,serif;">Preparing for memory impairments and behavi0ral problems ====
 * 4) <span style="font-family: Georgia,serif;">Not having other supports
 * 5) ====<span style="font-family: Georgia,serif;">Uncertain Future (Polk, 2005) ====
 * 6) ====<span style="font-family: Georgia,serif;">Restructuring Caregiver's lives around patient (Polk, 2005) ==== || # ====<span style="font-family: Georgia,serif;">Actually completing the funeral arrangements and Advanced Care Directive. ====
 * 7) ====<span style="font-family: Georgia,serif;">Having family help find extra care. ====
 * 8) ====<span style="font-family: Georgia,serif;">Bathing, feeding, clothing changes for patient ====
 * 9) ====<span style="font-family: Georgia,serif;">Gaining knowledge regarding this disease ====
 * 10) ====<span style="font-family: Georgia,serif;">Joining a support group (online or face-to-face) ====
 * 11) ====<span style="font-family: Georgia,serif;">Complete will/legal document stating patient's wants while they are still able to verbalize these. ====
 * 12) ====<span style="font-family: Georgia,serif;">Finding "distractions" for the patient to ease agitation and provide caregiver some respite (Polk, 2005) ==== ||


 * === <span style="font-family: Georgia,serif;">Adaptive === || === <span style="font-family: Georgia,serif;">Maladaptive  === ||
 * * ====<span style="font-family: Georgia,serif;">Babysitting grandchildren/other family ====
 * ====<span style="font-family: Georgia,serif;">Continuing with hobbies ====
 * ====<span style="font-family: Georgia,serif;">Attending own doctor appointments (not associated with the patient ====
 * ====<span style="font-family: Georgia,serif;">Joining support groups ====
 * ====<span style="font-family: Georgia,serif;">Using distraction activities with patient ==== || * ====<span style="font-family: Georgia,serif;">Not taking advantage of respite care ====
 * ====<span style="font-family: Georgia,serif;">Isolating self, not allowing visitors ====
 * ====<span style="font-family: Georgia,serif;">Not spending time with family ====
 * ====<span style="font-family: Georgia,serif;">Not attending one's own doctors appointments ====
 * ====<span style="font-family: Georgia,serif;">Not reading and aquiring knowledge about the disorder ==== ||

<span style="color: #000000; font-family: Georgia,serif;">__<span style="color: #800080; font-family: Georgia,serif;">Some concepts useful when working with this population are: __
====<span style="color: #800080; font-family: Georgia,serif;"> PI Theory can be explained as a theory which "addresses issues involving people's expectations and desires and the management of uncertainty" (Polk, 2005). <span style="color: #000000; font-family: Georgia,serif;">There are many levels of PI Theory but all combined, it really relates to one's Social Construction of Reality. People are expected with this theory to think of the probability of an outcome, evaluate their personal feelings about them and then incorporate those feelings into their own experiences (Polk, 2005). For example, "once caregivers decide that the probability is good that folding towels will distract a loved one effectively and the evaluation is good that it will decrease agitation, they apply this experience to the larger context of caregiving" (Polk, 2005). ====

====<span style="color: #000000; font-family: Georgia,serif;">Attribution Theory is another theory that can help caregivers understand their sometimes negative feelings towards the patient and lessen the burden of uncertainty. Attribution theory is based on controllability, where the caregiver perceives a behavior as either controlled or uncontrolled. "Caregivers of persons with AD may attribute negative behaviors to controllable personality traits, rather than to uncontrollable aging or AD processes" (Polk, 2005). Caregivers are more likely to perceive negative behaviors as being associated with the patients diagnosis. This is based on the caregivers perception of behaviors and their expectations (Polk, 2005). Polk (2005) also described the ease at which caregivers were able to identify when the patient was enjoying something and the difficulty they experience attempting to figure out the reason for agitation. They understand the patient is agitated but do not know why. ====

==__<span style="color: #800080; font-family: Georgia,serif;">Some interventions that are appr ____<span style="color: #800080; font-family: Georgia,serif;">opriate to use with Alzheimer's patients include: __== ====<span style="color: #000000; font-family: Georgia,serif;">Polk (2005) suggests three tools for caregivers to ease the frustration. These are<span style="color: #800080; font-family: Georgia,serif;"> knowledge, distractions <span style="color: #000000; font-family: Georgia,serif;">and humor. ====

====<span style="color: #000000; font-family: Georgia,serif;">"Knowledge serves as a tool for caregivers to increase confidence in their attributions and to prepare for future challenges" (Polk, 2005). To somewhat understand what to look for in the future is comforting in itself. This is where support groups and online resources could be of use. "Some caregivers reported that they avoided reading too far ahead about advanced stages of AD because too much information might lead them to form behavioral expectations" (Polk, 2005). ====

====<span style="color: #000000; font-family: Georgia,serif;">Distractions such as the example listed above regarding folding towels, others such as, picking out pennies from rice, hanging clothes on a string, and picking out poker chips from sand are useful distractions (Polk, 2005). These types of activities keep the patients busy and not focused on their confusion. For these brief periods of time when the patient is focused on a miniscule task, the caregiver then has a chance to relax and think clearly. I have seen these interventions used in assisted living facilities when visiting patients. ====

====<span style="color: #000000; font-family: Georgia,serif;">Humor is another way to deal with patients suffering from AD. Humorous encounters also help the caregivers in relation to their happiness as it gives them a glimpse of the loved one they are now lossing bit by bit. A caregiver shared in Polk's (2005) article, "Every once in a while, you'll see a spark of what and who she used to be. Sometimes her sense of humor is hysterical, and we'll both sit there and laugh" (Polk, 2005). This is another way to ease caregiver burden and burnout. ====

Ford, G. R., Goode, K. T., Barrett, J. J., Harrell, L. E., & Haley, W. E. (1997). Gender roles and caregiving stress: An examination of subjective appraisals of specific primary stressors in Alzheimer's caregivers. Aging & Mental Health, 1(2), 158-165.

Hayslip, B., Han, G., & Anderson, C. L. (2008). Predictors of Alzheimer's Disease Caregiver Depression and Burden: What Noncaregiving Adults Can Learn From Active Caregivers. Educational Gerontology, 34(11), 945-969. doi:10.1080/03601270802016481.

Polk, D. M. (2005). Communication and family caregiving for Alzheimer's dementia: linking attributions and problematic integration. Health Communication, 18(3), 257-273.

Werner, P., Mittelman, M. S., Goldstein, D., & Heinik, J. (2012). Family Stigma and Caregiver Burden in Alzheimer’s Disease. Gerontologist, 52(1), 89-97.

Wuest, J., Ericson, P., & Stern, P. (1994). Becoming strangers: the changing family caregiving relationship in Alzheimer's disease. Journal Of Advanced Nursing, 20(3), 437-443.

Stern, R. (2011, May 14). What is the difference between alzheimer's and dementia?. Retrieved from http://www.alzheimersreadingroom.com/2010/06/whats-difference-between-alzheimers-and.html

Alzheimer's Foundation of America. (n.d.). Alzheimer's foundation of america--about alzheimer's. Retrieved from http://www.alzfdn.org/AboutAlzheimers/definition.

Alzheimer's Foundation of America. (n.d.). Alzheimer's foundation of america--about dementia. Retrieved from http://www.alzfdn.org/AboutDementia/definition.html