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Alzheimer's Disease in the Family: A Coping Guide

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===Nursing Homes=== ===Nursing Homes===
Making the transition from living with a caregiver to living in a nursing home can be a stressful time for both the person with Alzheimer’s as well as their family<ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>. It is a crucial decision and may cause tension between family members. None the less, nursing homes can be beneficial for both the affected person and the family. The family reduces the amount of stress and burden associated with caring for the person with Alzheimer’s, while the affected person gains the care that they now need. Nursing homes are for those who need medical help and can no longer care for themselves; they require assistance in eating, bathing, dressing and going to the bathroom<ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>. In most nursing homes, there is a special unit with trained specifically for those who suffer from dementia. Nursing homes are usually an end of the road placement for a person with Alzheimer’s and it is therefore extremely important to make their surroundings as safe and comfortable as possible <ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>. Making the transition from living with a caregiver to living in a nursing home can be a stressful time for both the person with Alzheimer’s as well as their family<ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>. It is a crucial decision and may cause tension between family members. None the less, nursing homes can be beneficial for both the affected person and the family. The family reduces the amount of stress and burden associated with caring for the person with Alzheimer’s, while the affected person gains the care that they now need. Nursing homes are for those who need medical help and can no longer care for themselves; they require assistance in eating, bathing, dressing and going to the bathroom<ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>. In most nursing homes, there is a special unit with trained specifically for those who suffer from dementia. Nursing homes are usually an end of the road placement for a person with Alzheimer’s and it is therefore extremely important to make their surroundings as safe and comfortable as possible <ref name="Aging">National Institute on Aging. (2010). ''Caring for a person with Alzheimer’s disease.'' Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad</ref>.
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Revision as of 19:53, 31 October 2011

Contents

What is Alzheimer's Disease?

Alzheimer’s Disease is the most common form of dementia and it represents 60% of all dementias .[1] Dementia is the loss of cognitive functioning, thinking, remembering, reasoning and behavioural abilities that interfere with a person’s life and day to day activities making it almost impossible for that person to live dependently . [2]

Alzheimer’s Disease more specifically is an irreversible, progressive brain disease that eventually destroys memory and thinking skills and ultimately leaves the patient unable to carry out simple tasks of everyday life .[2] This disease affects both men and women of all races, religions and socioeconomic background .[3] Alzheimer’s Disease has a reputation for being a disastrous and torturous disease making it the most feared and publicized health problem in old age .[4] Although we still do not know how Alzheimer’s Disease starts we can speculate that it starts in the brain and atypical deposits of protein form throughout the brain and healthy neurons begin to work less efficiently.

Signs and Symptoms of Alzheimer's Disease

Alzheimer’s Disease is a type of disease that eventually in the later stages of the disease does not allow the person to live dependently because of the detrimental outcomes of the disease. Alzheimer’s Disease erases memory, it steals the ability to think and makes simple daily tasks such as getting dressed or remembering to eat almost impossible. The Alzheimer Society of Ontario outlines ten warning signs for the possible onset of Alzheimer's Disease: [3]


  • 1) memory loss that affects day to day function
  • 2) difficulty performing familiar tasks
  • 3) problems with language
  • 4) disorientation of time and place
  • 5) poor and decreased judgment
  • 6) problems with abstract thinking
  • 7) misplacing things
  • 8) changes in mood and behaviour
  • 9) changes in personality
  • 10) loss of initiative

Pocnet, Rossier, Antonietti & von Gunten (2011) conducted a study between individuals with Alzheimer’s Disease and typically aging adults and they found that personality differences between the two groups was different.[5] Individuals with early Alzheimer’s Disease may not even notice their personality changes without the evaluation by a close caregiver, however, if Alzheimer patients were able to notice personality differences it may become a useful piece of information in further diagnosing the disease. Pocnet et al., (2011) also found that Alzheimer’s Disease patients while compared to typically aging adults had higher scores on neuroticism and lower scores on extraversion, openness to experiences, and conscientiousness but there was not a difference on agreeableness.[5] They also found that these patients became more vulnerable to stress, more dependent, hopeless, reserved and also more compulsive. Alzheimer’s patients would generally prefer to be in situations they are familiar with to cut down on the stress factor involved with new experiences .[5] Considering all of these signs and symptoms along with personality disorders they can have a huge burden not only on the individual themselves but also on the primary caregiver and family. 


                                                                                     Image:society.jpg

Stages of Alzheimer's Disease

According to the Alzheimer Society of Ontario,[3] Alzheimer’s Disease can be broken down into stages:

  • 1. Early Stage: This stage of Alzheimer’s Disease the individual will have a mild impairment in forgetfulness, communication and a change in mood or behaviour. Individuals in this stage may only need minimal assistance.
  • 2. Middle Stage: At this stage of the disease there is a greater decline in the individual’s cognitive and functional abilities. At this stage memory and other cognitive abilities will persist to deteriorate making assistance necessary for a lot of daily tasks.
  • 3. Late Stage: During this stage the individual becomes incapable to communicate or look after themselves. The individual will need care 24 hours a day.
  • 4. End of Life: As the individual nears the end of life, the goal is to provide support and focus on the quality of life and comfort.

The Next Step

Although there is not yet a cure for Alzheimer’s Disease, scientists are conducting many studies to investigate what happens in the brain when Alzheimer’s strikes and what they can do to prevent or reverse the disease. One of the greatest mysterious of Alzheimer’s Disease is why it only attacks older adults and elderly .[2] Even though there is not a cure for the disease there are steps an individual can take, like lifestyle changes, such as a better diet and exercise, to help prevent the disease or slow down the progression of it. While Alzheimer’s Disease begins with an awareness of symptoms, the individual with the disease most likely is not the one to notice .[4] It is suggested that self and social identity can be lost, not necessarily because of the disease itself, but by the way other people think about the disease, the social stigma around the disease and how they treat the person with the disease[6][7] . It is necessary for the caregivers and families to create a supportive and comforting environment for the individual with Alzheimer’s Disease and get appropriate medical help when necessary. Below is a video that outlines how people with Alzheimer's feel and how their families adapted to the disease and made appropriate modifications to their lifestyle.



--Nm08tl 14:11, 29 October 2011 (EDT)Nicole McIntosh


How Can You Help a Family Member with AD?

Home Adaptation

Various modifications may need to be considered in order to achieve safety and security in the home. Because of individual differences, however, adaptations may vary drastically from one home to another. For this reason, the individual’s abilities should be assessed regularly throughout the progression of the disease, and modifications should be made accordingly.

The following are modifications that are typical for the homes of individuals with AD:

THROUGHOUT THE ENTIRE HOME

Image:Blank SM.jpgImage:Blank SM.jpgImage:Tripping SM.jpgScatter rugs should be removed to prevent falling. Keep floors clear of clutter.[8]
Image:Blank SM.jpgImage:Blank SM.jpgImage:Blank SM.jpgNight-lights should be used to facilitate movement at night. Automatic light sensors may also be used.[8]. It has also been found that person’s with Alzheimer’s disease who have a family caregiver, enter 24 hour care facilities much later than those who live with a hired caregiver or live in assisted living residence[9]. Despite living in a home where independence can be preserved, in-home services are often necessary, for the person with Alzheimer’s as well as their caregivers.

In-Home Respite Care

In-home respite care offers the primary caregiver of someone with Alzheimer’s disease a short term or temporary break from caring for the loved one. The temporary caregiver is trained to take care of someone with Alzheimer’s disease to come into their home and follow the same routine put in place by the primary caregiver[10]. By utilizing this service, the primary caregiver has time to run errands or take a mini-vacation. In-home respite care can relieve stress or the overwhelming physical and emotional burdens of caring for someone with Alzheimer’s, in turn helps to support the relationship[11][10].

Home Health Care

The primary caregiver is not always able to care for the person with Alzheimer’s disease in particular aspects. Bathing or giving medication may be better suited for someone who is trained. Caregivers will often hire a nurse or a private health aid[12] [13] to help come to the home for a couple of hours and take care of the person with Alzheimer’s. A caregiver may also have other responsibilities, such as their job or taking care of their children. In these cases, an independent caregiver may be hired. An independent caregiver comes to the home and follows the same daily routines that are used in the home[13]. Independent care givers are also hired by people with Alzheimer’s who live alone. Independent care givers also come into the home and cook and do housework, making living at home more manageable. Meal’s on Wheels is also an option for someone who lives alone. Meals on Wheels provides hot meals on a daily basis, which are delivered to the home[13].

Adult Day Centers

People with Alzheimer’s disease may also benefit from adult day centers. These centers give the caregivers time to themselves and run daily errands[14]. For those living with the disease, it provides support and a chance to socialize, in a safe environment[13]. Most adult day centers provide services such as, health services, personal care and behaviour management[14][13]. There are also other benefits in using adult day centers. In the research conducted by Wilson, McCann, Li, Aggarwal, Gilley and Evans,[15] it was found that Alzheimer’s patients, who were placed into nursing home facilities right after their diagnosis, showed a faster rate of cognitive decline, than affected person’s who had previous exposure to care facilities such as adult day centers. The researchers suggest that this exposure may affect a person’s ability to adapt to a long-term care facility and therefore the cognitive decline will be less rapid[15].

This video shows how people affected by Alzheimer's disease, find support through the services that are mentioned above as well as other in-home sevices.

Long-Term Services

Eventually, the disease will progress to the point where most cognitive functions are lost and caregiving will become a very difficult task. Often, a person with Alzheimer’s will need more care than what their families can provide. At this stage, families may choose a long-term facility.

Assistive Living Residences

Another way a person with Alzheimer’s disease can keep their independence is by moving to an assistive living residence. Assistive living residences offer 24 hour support services to meet their daily needs such as personal care, medication management and social activities programs. This is an option for someone who needs assistance with housekeeping or meal preparation, but who do not require long-term care[16].

Nursing Homes

Making the transition from living with a caregiver to living in a nursing home can be a stressful time for both the person with Alzheimer’s as well as their family[13]. It is a crucial decision and may cause tension between family members. None the less, nursing homes can be beneficial for both the affected person and the family. The family reduces the amount of stress and burden associated with caring for the person with Alzheimer’s, while the affected person gains the care that they now need. Nursing homes are for those who need medical help and can no longer care for themselves; they require assistance in eating, bathing, dressing and going to the bathroom[13]. In most nursing homes, there is a special unit with trained specifically for those who suffer from dementia. Nursing homes are usually an end of the road placement for a person with Alzheimer’s and it is therefore extremely important to make their surroundings as safe and comfortable as possible [13].

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--Md08tk 22:44, 30 October 2011 (EDT)-- Maartje Dekker

Notes and References

  1. ↑ Niedermeyer, E., Ghigo, J.O. (2011). Alzheimer dementia: An overview and a promising new concept. Am J Electroneurodiagnostic technol, 51, 82-91.
  2. ↑ 2.0 2.1 2.2 National Institute on Aging (2011, September). Alzheimer’s disease fact sheet. Retrieved from http://www.nia.nih.gov/Alzheimers/Publications/adfact.htm.
  3. ↑ 3.0 3.1 3.2 Alzheimer Society of Ontario (2009, March). Alzheimer’s disease 10 warning signs. Retrieved from http://www.alzheimer.ca/english/disease/warningsigns.htm.
  4. ↑ 4.0 4.1 MacRae, H. (2008). Making the best you can of it: living with early stage alzheimer’s disease. Sociology health & illness, 30 (3), 396-412.
  5. ↑ 5.0 5.1 5.2 Pocnet, C., Rossier, J., Antonietti, J., von Gunten, A. (2011). Personality changes in patients with beginning Alzheimer disease. La Revue canadienne de psychiatrie,56 (7), 408-417.
  6. ↑ Sabat, S. R. (2001). The experience of alzheimer’s disease & Life through a tangled web. Malden, Massachusetts: Blackwell.
  7. ↑ Sabat, S. R., Harre, R. (1992). The construction and deconstruction of self in alzheimer’s disease. Aging and Society, 12, 443-461.
  8. ↑ 8.0 8.1 U.S. Department of Health and Human Services. (2010). Home safety for people with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/NR/rdonlyres/A86CA4FA-CAA9-4E8A-8B38-F5887EFABF2B/0/HomeSafetyupdateFINAL32310.pdf
  9. ↑ Habermann, S., Cooper, C., Katona, C., & Livingston, G. (2009). Predictors of entering 24-h care for people with Alzheimer’s disease: results from the LASER-AD study. International Journal of Geriatric Psychiatry, 24, 1291-1298.
  10. ↑ 10.0 10.1 Alzheimer’s Association. (2007b). Respite care guide: Finding what’s best for you [brochure]. Retrieved from http://www.alz.org/national/documents/brochure_respitecareguide.pdf
  11. ↑ Aging, Disability and Home Care. (2010). Respite program guidelines [brochure]. Retrieved from http://www.adhc.nsw.gov.au/__data/assets/file/0005/236786/ADHC_respite_guidelines.pdf
  12. ↑ Metlife Mature Market Institute. (2008). Long distance caregiving [brochure]. Retrieved from http://www.metlife.com/assets/cao/mmi/publications/since-you-care-guides/mmi-long-distance-caregiving.pdf
  13. ↑ 13.0 13.1 13.2 13.3 13.4 13.5 13.6 13.7 National Institute on Aging. (2010). Caring for a person with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad
  14. ↑ 14.0 14.1 Alzheimer’s Association. (2007a). Adult day centers [brochure]. Retrieved from http://www.alz.org/national/documents/topicsheet_adultday.pdf
  15. ↑ 15.0 15.1 Wilson, R. S., McCann, J. J., Li, Y., Aggarwal, N. T., Gilley, D. W., & Evans, D. A. (2007). Nursing home placement, day care use, and cognitive decline in Alzheimer’s disease. The American Journal of Psychiatry, 164, 910-915.
  16. ↑ Metlife Mature Market Institute. (2009). Choosing an assisted living community [brochure]. Retrieved from http://www.metlife.com/assets/cao/mmi/publications/since-you-care-guides/mmi-choosing-assisted-living-community.pdf
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