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Alzheimer's Disease in the Family: A Coping Guide

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Alzheimer’s disease is the most common form of dementia (representing 60% of all dementia cases).[1] Dementia is the loss of cognitive functioning and behavioural abilities, which interferes with everyday activities.[2] More specifically, Alzheimer's disease is a progressive and irreversible brain disease that destroys memory and thinking, ultimately leaving individuals unable to carry out simple tasks of daily living.[2] This disease affects both men and women of all races, religions, and socioeconomic backgrounds.[3] Furthermore, this 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 no cure has yet been found, scientists are conducting many studies to investigate how the brain is affected by the disease, as well as what can be done to prevent, or even reverse, these effects. In the meantime, however, the disease can be made more manageable with various adaptations and lifestyle changes.

Contents

[edit] Signs and Symptoms

Listed below are 10 warning signs outlined by the Alzheimer Society of Ontario.

  • Memory loss that affects day-to-day function[3]
  • Difficulty performing familiar tasks[3]
  • Language problems[3]
  • Disorientation of time and place[3]
  • Poor judgment[3]
  • Problems with abstract thinking[3]
  • Frequently misplacing objects[3]
  • Shifts in mood and behaviour[3]
  • Personality changes[3]
  • Loss of initiative[3]

Incidentally, individuals with Alzheimer's disease are likely to experience drastic personality changes. For this reason, it is important for primary caregivers and family members to be aware of these changes. Pocnet, Rossier, Antonietti and von Gunten (2011) compared individuals with Alzheimer's disease to typically aging adults and found that these two groups differed significantly in terms of their individual personalities.[5] To illustrate, individuals with Alzheimer’s disease had higher scores for neuroticism and lower scores for extraversion, openness to experience, and conscientiousness.[5] They also found that these individuals were more stressed, dependent, hopeless, reserved, and compulsive.[5] In addition, it was noted that individuals with Alzheimer’s disease generally preferred familiar situations in order to reduce stress levels associated with new experiences.[5]

With this in consideration, it is evident that the implications associated with this disease are enormous, not only for the individuals with the disease, but also for primary caregivers and family members.

[edit] Stages

According to the Alzheimer Society of Ontario, Alzheimer’s disease can be broken down into four stages:

1. Early stage: individuals will experience increased forgetfulness, impaired communication, and changes in mood and behaviour.[3] These individuals require minimal assistance.[3]
2. Middle stage: individuals experience a greater decline in cognitive and functional abilities.[3] These individuals require assistance for many activities of daily living.[3]
3. Late stage: individuals become unable to communicate or perform activities of daily living.[3] These individuals require 24 hour care.[3]
4. End of life: the goal during this final stage is to provide support and maintain comfort and quality of life.[3]

[edit] How Can You Help Your Loved One?

[edit] 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.[6] 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.[6]

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. Floors should be kept clear of clutter at all times.[7]
  • Night-lights and automatic light sensors should be used to facilitate movement at night.[8]
  • Drain traps should be used to avoid lost items. [7]
  • Flammable liquids and harmful cleaning products should be locked away.[7][8]
  • Medications should also be locked away.[7][8]


The Bathroom

  • Door locks should be removed in case of emergencies.[7][8]
  • Grab bars should be installed near toilets and bathtubs.[7][8][9]
  • Shower stools and handheld shower heads may be used to facilitate bathing and prevent falling.[7][9]
  • Non-skid strips or rubber mats should also be used to prevent falling.[7][9]
  • Use of appliances should be monitored (e.g. hair dryers and electric razors).[7][8] Ideally, these items should be used in another room to avoid contact with water.[7]


The Bedroom

  • Electric blankets and heating pads should be removed. If such items must be used, their use should be monitored.[7][8]


The Kitchen

  • Hazardous items (e.g. knives and matches) should be locked away in cabinets and drawers.[7][8] Childproof latches may be used for caregiver convenience.[7][8]
  • Small appliances (e.g. blenders and toasters) should be locked away or hidden.[8]
  • Larger appliances (e.g. microwaves) should be unplugged when not in use.[8]
  • Stoves should be equipped with hidden gas valves or electric switches. Safety knobs and automatic turn-off switches may also be used.[7][8]
  • Fire extinguishers should be kept nearby, though out of sight to avoid accidental use.[8] Be sure to inform family members and guests where fire extinguishers are kept.
  • Electric garbage disposals should be disconnected to avoid injury.[7][8]
  • Refrigerators should be cleaned regularly to avoid the ingestion of spoiled or expired food.[8]
  • Items that could be mistaken for food, such as decorative fruits and vegetables, should be removed to avoid choking.[7]


[edit] Everyday Care

Activities of daily living, such as bathing, dressing and feeding, become more difficult to manage as the disease progresses. Thus, caregiving demands increase significantly as the individual’s abilities decrease. Both the caregiver and the individual with Alzheimer’s disease are unable to cope due to the overwhelming difficulties that accompany everyday care. Some helpful suggestions regarding these difficult tasks are listed below.

Bathing
Bathing is typically frightening and/or confusing for an individual with Alzheimer's disease.[9][10] For this reason, it is better to plan ahead and follow routines.[9][10]

Before bathing:

  • Adjust the temperature of the bathroom, if necessary.[9][10]
  • Fill the bathtub and adjust the temperature of the water.[9][10]
  • Make sure you have everything you need.[9][10] Confused or severely impaired individuals should not be left alone.[7][9]
  • Inform the individual that it is time for a bath, and discuss, step-by-step, what is going to happen.[9]

During bathing:

  • Help maintain their dignity by having them do what they can on their own.[9][10]
  • Be courteous.[9][10] Place a towel on the individual’s shoulders and/or lap to minimize exposure.[9]
  • Be patient; do not rush the individual.[9][10]
  • Reduce the risk of getting hit by giving the individual a cloth to hold.[9]

After bathing:

  • Make sure the individual is dry to prevent skin rashes or infections.[9]
  • Apply ointments if necessary.[9]

Dressing
Getting dressed can be extremely challenging for an individual with Alzheimer's disease, particularly when it comes to choosing an outfit.[6] In addition, buttons and zippers may be difficult to manage as well.[10]

To ease the challenges associated with dressing:

  • Limit the number of outfits left in the closet and/or drawers.[10] If choices are limited, the individual is more likely to choose an outfit without getting confused.[9][10]
  • Allow the individual to dress independently, if possible.[9][10]
  • Have clothes laid out in the order that they should be put on.[9][10]
  • Provide enough time for the individual to dress independently. Do not rush the individual.[10]
  • Buy loose clothes that are comfortable and easy to put on.[9]

Eating
Eating habits typically do not change until later stages of the disease.[6] Once this occurs, however, the individual may no longer be fit to live alone.[6] Some helpful suggestions regarding eating are listed below.

  • Purchase foods that are healthy, enjoyable and easy to prepare.[9]
  • If the individual cannot prepare meals, have meals prepared ahead of time.[9]
  • Allow the individual to make meal choices, and prevent confusion by limiting the number of choices.[10]
  • Select foods and utensils that encourage independent eating.[10]
  • Individuals with Alzheimer's disease often forget to eat. Leave notes and/or call to remind the individual.[10]
  • As the disease progresses, individuals with Alzheimer's 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.[7]
  • Learn the Heimlich maneuver in case the individual chokes.[7]

[edit] In-Home Services

Often, individuals who are diagnosed with Alzheimer's disease do not want to be placed in a long-term care facility, such as a nursing home. They may wish to preserve their independence, as they are still in the very early stages of the disease, by living at home or moving in with a primary caregiver. Living at home can offer many benefits, such as maintaining social networks and being surrounded by familiar environments.[11] Also, individuals with Alzheimer’s disease who have family caregivers enter 24 hour care facilities much later than those who live with hired caregivers, or those who live in assisted living residences.[11] Despite living in a home where independence can be preserved, in-home services are often necessary for an individual with Alzheimer’s disease, as well as their caregivers.


[edit] In-Home Respite Care

In-home respite care allows primary caregivers to take a break from caring for their loved ones. Trained caregivers are sent to the homes of individuals with Alzheimer's disease and follow the same routine put in place by the primary caregivers.[12] By utilizing these services, primary caregivers have time to run errands or even take a mini-vacation. In-home respite care can relieve stress or the overwhelming physical and emotional burdens associated with caring for individuals with Alzheimer’s disease.[13][12] Ultimately, this helps to support the relationship between the caregiver and the individual with Alzheimer's disease.[13][12]

[edit] Home Health Care

The primary caregiver may not always be well suited to care for the individual with Alzheimer’s disease, or they may have other responsibilities to attend to. For this reason, home health care services are available for both individuals who live alone and individuals who live with a primary caregiver.[14][9] For individuals who live alone, health care professionals will assist with daily household routines, such as cooking and cleaning, as well as activities of daily living, such as bathing, dressing, and giving medication.[14][9] For those who live with a primary caregiver, however, health care professionals typically assist only with activities of daily living.[14][9]

[edit] Adult Day Centers

Adult day centers are beneficial for both primary caregivers and individuals with Alzheimer’s disease. In fact, primary caregivers are given the opportunity to run daily errands while individuals with the disease are given the opportunity to socialize in a safe environment.[9] In addition, most adult day centers provide a number of services, including health care, personal care, and behavioural management.[15][9] It has been suggested that individuals who are placed in long-term care immediately after being diagnosed show quicker cognitive declines than individuals who are exposed to adult day centers prior to long-term care. It has also been suggested that early exposure to adult day centers enhances an individual's ability to adapt to long-term care facilities.[16]

[edit] Assisted Living Residences

Moving into an assisted living residence is another option for individuals who may require assistance with everyday tasks, such as housekeeping or meal preparation, but who do not yet require long-term care.[17] These residences offer 24 hour support services to meet the needs of the individuals, while respecting the privacy and independence of these individuals. Other services that are available in assisted living residences include personal care, management of medications, and social activity programs.[17]

The following video illustrates how individuals affected by Alzheimer's disease find support through the services mentioned above, as well as other in-home services.

[edit] Long-Term Services

Eventually, the disease will progress to the point where most cognitive functions are lost. At this stage, individuals with Alzheimer’s disease will need more care than what can be provided by their primary caregivers. Consequently, families may choose to place their loved ones in long-term facilities.

[edit] Nursing Homes

Making the transition from living with a primary caregiver to living in a nursing home can be stressful for both the individual with Alzheimer’s, as well as the family.[9] It is a crucial decision that often causes a lot of tension between family members. Nonetheless, nursing homes can be very beneficial. The amount of stress and burden associated with caring for individuals with the disease is reduced, while the individuals receive the intensive care that is needed. Nursing homes are for those who need medical help and can no longer care for themselves. These individuals require assistance with eating, bathing, dressing, and going to the bathroom.[9] In most nursing homes, there is a special unit with staff, trained specifically to work with those who suffer from dementia. Nursing homes are typically then end-of-the-road placement for these individuals, and it is, therefore, extremely important to make their surroundings as safe and comfortable as possible.[9]

[edit] References

  1. Niedermeyer, E., & Ghigo, J.O. (2011). Alzheimer dementia: An overview and a promising new concept. American Journal of Electroneurodiagnostic Technology, 51, 82-91.
  2. 2.0 2.1 National Institute on Aging. (2011). Alzheimer’s disease fact sheet. Retrieved from http://www.nia.nih.gov/Alzheimers/Publications/adfact.htm.
  3. 3.00 3.01 3.02 3.03 3.04 3.05 3.06 3.07 3.08 3.09 3.10 3.11 3.12 3.13 3.14 3.15 3.16 3.17 Alzheimer Society of Ontario. (2009). Alzheimer’s disease: 10 warning signs. Retrieved from http://www.alzheimer.ca/english/disease/warningsigns.htm.
  4. MacRae, H. (2008). Making the best you can of it: Living with early stage Alzheimer’s disease. Sociology Health & Illness, 30, 396-412.
  5. 5.0 5.1 5.2 5.3 Pocnet, C., Rossier, J., Antonietti, J., & von Gunten, A. (2011). Personality changes in patients with beginning Alzheimer disease. La Revue Canadienne de Psychiatrie, 56, 408-417.
  6. 6.0 6.1 6.2 6.3 6.4 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
  7. 7.00 7.01 7.02 7.03 7.04 7.05 7.06 7.07 7.08 7.09 7.10 7.11 7.12 7.13 7.14 7.15 7.16 7.17 7.18 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
  8. 8.00 8.01 8.02 8.03 8.04 8.05 8.06 8.07 8.08 8.09 8.10 8.11 8.12 8.13 8.14 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
  9. 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 9.19 9.20 9.21 9.22 9.23 9.24 9.25 9.26 9.27 9.28 9.29 9.30 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
  10. 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 10.15 10.16 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.
  11. 11.0 11.1 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.
  12. 12.0 12.1 12.2 Alzheimer’s Association. (2007). Respite care guide: Finding what’s best for you. Retrieved from http://www.alz.org/national/documents/brochure_respitecareguide.pdf
  13. 13.0 13.1 Aging, Disability and Home Care. (2010). Respite program guidelines. Retrieved from http://www.adhc.nsw.gov.au/__data/assets/file/0005/236786/ADHC_respite_guidelines.pdf
  14. 14.0 14.1 14.2 Metlife Mature Market Institute. (2008). Long distance caregiving. Retrieved from http://www.metlife.com/assets/cao/mmi/publications/since-you-care-guides/mmi-long-distance-caregiving.pdf
  15. Alzheimer’s Association. (2007). Adult day centers [brochure]. Retrieved from http://www.alz.org/national/documents/topicsheet_adultday.pdf
  16. 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.
  17. 17.0 17.1 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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