January 12, 2006

Carlene Daley- Making Community Living Possible For A Person with an Intellectual Disability (ID)and a Diagnosis of Alzheimer’s Disease (AD).

Alzheimer Disease (AD) is defined as a disease of the brain that is progressive in nature. It has an erratic nature with a host of symptoms.

Dementia is a host of symptoms (there are 72 kinds of dementia) Example: memory

(processing and/or retrieving information); name-calling of ordinary things; daily living recall e.g. using the washer, driving, using the bathroom, realizing the need to use the bathroom (making the connection).

Other behavioral observations may be: depression, anxiety, frustration, embarrassment, isolation, agitation, wondering, confusion, word finding, losing skills e.g. using the micro-wave, not recognizing people they know, paranoia, incontinence, lack of confidence and many more. Examples of mild/moderate stage of AD would be forgetting how to navigate, using typical items for daily living, etc. This is when    medication is typically begun. The severe stage a person may lose the ability to walk, ability to eat or know that they are hungry, swallowing, loss of words, etc. AD is unique to each person. No one-persons symptoms look the same.

AD is one of 72 types of Dementia. Examples of other types are: Transient Cerebral Ischemic Attack (TIA), Pick’s Disease, Lewy Body Disease, and Parkinson’s. It is critical that there is a complete physical assessment to rule out all other physical ailments since there is no full proof way to diagnose Alzheimer other then a presentation of a variety of symptoms.

There is a notable increase of people getting AD?  Why is just a guess at this point in time?  In addition, the younger the person who is diagnosed with AD the faster the disease progresses. No one really understands why.

AD supersedes intellectual and developmental disabilities ( I/DD) when considering the treatment and intervention. This may be hard for people who support the person to understand. Focus on the AD.

Treatment for AD is typically medication. To date, the most successful drugs used are Aricept and Namenda which modifies the chemical structure of the brain.

When do you start medication? Typically, you do not begin medications before a person is symptomatic which is being considered by families/physicians of people with Down syndrome (DS). NOTE: Research support that people with DS age more rapidly and develop dementia of Alzheimer type more frequently than their non- DS counterparts with I/DD.

The presenter used overheads to remind us that there is a change in the brain that compromises the person’s brain. Most important to remember as care providers due to the radical changes in the person, which can be most frustrating to handle during the day-to-day support of the individual.

At this point of the lecture the presenter turned her focus to the DSP/caregiver. 

DSP’s are wonderful and invaluable to the people they support. In addition, the needs of the DSP and those they support are very much the same. As outlined in Maslow’s Hierarchy of Needs theory we all have the same needs. Maslow’s Hierarchy of Needs (original five-stage model) is composed of the most primary: biological and physiological needs and then moves on to safety, belongingness/love, esteem and self-actualization needs. As the person you support becomes more symptomatic there needs may become very basic but they still desire many of the needs described in the five stage model although often they are harder to obtain due to their symptoms or limitations placed on their lives due to the disease.

DSP’s must take care of themselves due to the daily and often frustrations experienced due to the symptoms of the person they are supporting. Remember to take 5 minutes throughout the day to heal ones self because those who are caregivers are giving all the time – in their personal life and professional life. One suggestion is to wrap yourself up in a blanket and sit in a rocker and nurture yourself for 5 minutes away from others and the constant demands. 

As AD progresses the DSP will need more resources and reassurance to address the needs of the person they support.

HANDOUT: Twenty ways for caregivers to take care of yourself. 

Daily tips in caring for the person with Alzheimer

Good Reference: Alzheimer’s Proofing Your Home by Mark L Warner. Not only does the book provide ample workable and affordable examples of transforming your home into a safe haven. In addition, the book helps the reader better understand the disease and the changes that take place in the person.

As noted above people with AD have memory problems and cognitive impairment (difficulties with thinking and reasoning) People with dementia can be hyper sensitive. 

 and eventually will not be able to care for themselves. It is imperative that general safety concerns are addressed.  Think prevention, adapt the environment and minimize danger. In addition, maintain structure/predictability and a safe and secure home for the person with AD. And always remain sensitive to the fragility and vulnerability of the person you support. Rocking chairs or glider chairs are very soothing for a person who is anxious; Blankets are very soothing; hand holding;

References:

            Kathleen Bishop – Strong Center for Developmental Disabilities

                                           University of Rochester School of Medicine and Dentistry

                                            Rochester, NY 14642

                                           kathleen_bishop@urmc.rochester.edu

Maslow’s Hierarchy of Needs (see attachment)

Home Safety for People with AD  (see attachment)