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Alzheimer's Disease in the Family: A Coping Guide
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| 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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| - | --[[User:Md08tk|Md08tk]] 22:44, 30 October 2011 (EDT)-- Maartje Dekker | ||
| ==Notes and References== | ==Notes and References== | ||
| <references/> | <references/> | ||
Revision as of 13:11, 22 November 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 the individual to live independently. [2]
More specifically, Alzheimer's disease is an irreversible, progressive brain disease that eventually destroys memory and thinking skills and ultimately leaving the individual 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 the cause of Alzheimer's disease is unknown,we speculate that it begins in the brain, where atypical deposits of protein form throughout the brain. As a result, healthy neurons begin to work less efficiently.
Signs and Symptoms of Alzheimer's Disease
In the later stages of Alzheimer's disease, the individual is unable to live independently 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 personaliy 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.
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 of a loved one with Alzheimer's disease.[8] 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.[8]
The following are modifications that are typical for the homes of individuals with Alzheimer's disease:
Throughout the Entire Home
- Scatter rugs and electrical cords should be removed to prevent falling. Keep floors clear of clutter at all times.[9]
- Night-lights and automatic light sensors should be used to facilitate movement at night.[10]
- Drain traps should be used to avoid lost items. [9]
- Flammable liquids and harmful cleaning products should be locked away.[9][10]
- Medications should also be locked away.[9][10]
The Bathroom
- Door locks should be removed in case of emergencies.[9][10]
- Grab bars should be installed near toilets and bathtubs.[9][10][11]
- Shower stools and handheld shower heads may be used to facilitate bathing and prevent falling.[9][11]
- Non-skid strips or rubber mats should also be used to prevent falling.[9][11]
- Monitor the use of appliances, such as hair dryers and electric razors.[9][10] Ideally, these items should be used elsewhere to avoid contact with water.[9]
The Bedroom
- Remove electric blankets and heating pads. If such items must be used, monitor their use and hide all temperature control units.[9][10]
The Kitchen
- Hazardous items (e.g. knives and matches) should be locked away in cabinets and drawers.[9][10] Childproof latches may be used for caregiver convenience.[9][10]
- Small appliances (e.g. blenders and toasters) should be locked away or hidden.[10]
- Larger appliances (e.g. microwaves) should be unplugged when not in use.[10]
- Stoves should be equipped with hidden gas valves or electric switches. Safety knobs and automatic turn-off switches may also be used.[9][10]
- Fire extinguishers should be kept nearby, though out of sight to avoid accidental use.[10] Be sure to inform family members and guests where fire extinguishers are kept.
- Electric garbage disposals should be disconnected to avoid injury.[9][10]
- Refrigerators should be cleaned regularly to avoid the ingestion of spoiled or expired food.[10]
- Items that could be mistaken for food, such as decorative fruits and vegetables, should be removed to avoid choking.[9]
Everyday Care
Bathing
Bathing is typically frightening and/or confusing for an individual with Alzheimer's disease.[11][12] For this reason, it is better to plan ahead and follow routines.[11][12]
Before:
- Adjust the temperature of the bathroom, if necessary.[11][12]
- Fill the bathtub and adjust the temperature of the water.[11][12]
- Make sure you have everything you need.[11][12] Confused or severely impaired individuals should not be left alone.[9][11]
- Inform the individual that it is time for a bath, and discuss, step-by-step, what is going to happen.[11]
During:
- Help maintain their dignity by having them do what they can on their own.[11][12]
- Be courteous.[11][12] Place a towel on the individual’s shoulders and/or lap to minimize exposure.[11]
- Be patient; do not rush the individual.[11][12]
- Reduce the risk of getting hit by giving the individual a cloth to hold.[11]
After:
- Make sure the individual is dry to prevent skin rashes or infections.[11]
- Apply ointments if necessary.[11]
Getting dressed can be extremely challenging for an individual with Alzheimer's disease, particularly when it comes to choosing an outfit. [8] However, buttons and zippers may be rather difficult to manage as well.[12]
- Limit the number of outfits left in the closet and/or drawers.[12] If choices are limited, the individual is more likely to choose an outfit without getting confused.[11][12]
- Allow the individual to dress independently, if possible.[11][12]
- Have clothes laid out in the order that they should be put on.[11][12]
- Provide enough time for the individual to dress independently. Do not rush the individual.[12]
- Buy loose clothes that are comfortable and easy to put on.[11]
Eating habits typically do not change until later stages of the disease.[8] Once this occurs, however, the individual may no longer be fit to live alone.[8]
- Purchase foods that are healthy, enjoyable and easy to prepare.[11]
- If the individual cannot prepare meals, have meals prepared ahead of time.[11]
- Allow the individual to make meal choices. Prevent confusion by limiting the number of choices.[12]
- Select foods and utensils that encourage independent eating.[12]
- Individuals with Alzheimer's disease often forget to eat. Leave notes and/or call to remind the individual.[12]
- As the disease progresses, individuals with Alzheimer's disease lose the ability to know what they should and should not eat. For this reason, it is important to keep the number for poison control by the telephone.[9]
- Learn the Heimlich maneuver in case the individual chokes.[9]
--Stephanie Lampman 22:12, 30 October 2011 (EDT)sl08te
In-Home Services
Often times, people who are diagnosed do not want to be placed in a long-term facility such a nursing home or an assisted living residence. They may wish to preserve their independence by living at home with their spouse, or move in with a family member. Living at home can offer many benefits such maintaining their social networks as well as being surrounded by a familiar environment[13]. 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[13]. 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[14]. 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[15][14].
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[16] [17] 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[17]. 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[17].
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[18]. For those living with the disease, it provides support and a chance to socialize, in a safe environment[17]. Most adult day centers provide services such as, health services, personal care and behaviour management[18][17]. There are also other benefits in using adult day centers. In the research conducted by Wilson, McCann, Li, Aggarwal, Gilley and Evans,[19] 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[19].
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[20].
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[17]. 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[17]. 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 [17].
Notes and References
- ↑ Niedermeyer, E., Ghigo, J.O. (2011). Alzheimer dementia: An overview and a promising new concept. Am J Electroneurodiagnostic technol, 51, 82-91.
- ↑ 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.
- ↑ 3.0 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.
- ↑ 4.0 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.
- ↑ 5.0 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.
- ↑ Sabat, S. R. (2001). The experience of alzheimer’s disease & Life through a tangled web. Malden, Massachusetts: Blackwell.
- ↑ Sabat, S. R., Harre, R. (1992). The construction and deconstruction of self in alzheimer’s disease. Aging and Society, 12, 443-461.
- ↑ 8.0 8.1 8.2 8.3 8.4 Rushford, N. (2009). Adapting your home to living with dementia: A resource book for living at home and guide to home adaptations. Retrieved from http://www.cmhc-schl.gc.ca/odpub/pdf/66495.pdf
- ↑ 9.00 9.01 9.02 9.03 9.04 9.05 9.06 9.07 9.08 9.09 9.10 9.11 9.12 9.13 9.14 9.15 9.16 9.17 9.18 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
- ↑ 10.00 10.01 10.02 10.03 10.04 10.05 10.06 10.07 10.08 10.09 10.10 10.11 10.12 10.13 10.14 Alzheimer’s Association. (2005). Safety at home: Adapting the home to support the person with dementia [brochure]. Retrieved from http://www.alz.org/national/documents/brochure_homesafety.pdf
- ↑ 11.00 11.01 11.02 11.03 11.04 11.05 11.06 11.07 11.08 11.09 11.10 11.11 11.12 11.13 11.14 11.15 11.16 11.17 11.18 11.19 11.20 11.21 11.22 National Institute on Aging. (2010). Caring for a person with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/NR/rdonlyres/6A0E9F3C-E429-4F03-818E-D1B60235D5F8/0/100711_LoRes2.pdf
- ↑ 12.00 12.01 12.02 12.03 12.04 12.05 12.06 12.07 12.08 12.09 12.10 12.11 12.12 12.13 12.14 12.15 12.16 National Institute on Aging. (2010). Caregiver guide: Tips for caregivers of people with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/NR/rdonlyres/C2F11D41-E5FE-435D-9C9D-A3489319D4AD/14142/Caregiver_Guide10MAR12.PDF.
- ↑ 13.0 13.1 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.
- ↑ 14.0 14.1 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
- ↑ 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
- ↑ 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
- ↑ 17.0 17.1 17.2 17.3 17.4 17.5 17.6 17.7 National Institute on Aging. (2010). Caring for a person with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/alzheimers/publications/caringad
- ↑ 18.0 18.1 Alzheimer’s Association. (2007a). Adult day centers [brochure]. Retrieved from http://www.alz.org/national/documents/topicsheet_adultday.pdf
- ↑ 19.0 19.1 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.
- ↑ 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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