Discussions in Alzheimer’s and Dementia Care: In case you missed it!
On December 15th, the Chicago Bridge held a discussion group on the topic of Alzheimer’s disease and other related dementias. A variety of professionals attended with experiences in home care, residential care, research, policy, community care, family consultation, art therapy graduate students, social work graduate students, as well as professionals with hospice and health care experience. With this diverse group, discussions really flowed.
In this post, I will lay out what we discussed in the meeting. Hopefully those of you who did not attend this meeting are able to learn more about dementia. Please continue this discussion in the comment section below.
What is Dementia? How is it different from Alzheimer’s disease?
To help lay out our discussion, it was important to start on the same page. Click on this link to access the handout-Understanding Dementia- by Northwestern University’s CNADC In this handout, developed at Northwestern’s Cognitive Neurology and Alzheimer’s Disease Center, we examined the different types of dementia, what they mean, and how they affect those we work with. We started with a basic understanding of dementias. Below you will find more information about various types of dementia, similar to the details of the handout:
Mild Cognitive Impairment
An abnormal for a given individual, but is insufficient to diagnose dementia because activities of daily living are not impaired. Requires only subjective complaints of cognitive deterioration and some objective evidence on neurocognitive examination. ‘More people with MCI go on to develop AD than those without MCI within a certain timeframe. However, not everyone who has MCI develops AD.’ (NIA, 2010)
Dementia
Dementia is a gradual decline from former level of cognitive abilities that may include: memory, language, visual perception, and reasoning and/or a gradual decline from former level of behavior & personality including judgment, emotional reactions. These changes interfere with customary activities of daily living. Dementia is a neurodegenerative progress, which means it will continue to worsen over time and affect other areas of the brain. The onset of dementia over the age of 65 is called late onset. However, there are many families who are diagnosed under the age of 65, known as young onset.
Alzheimer’s disease
The most common form, or type, of dementia. Alzheimer’s pathology is what scientists see in their microscope when looking at the brain tissue. This disease, like all dementias, is a progression and neurodegenerative, which means it grows worse over time and destroys the brain cells. The hallmark symptom of Alzheimer’s disease is memory loss. This is the typically the first sign that the dementia may be of the Alzheimer’s type. Later deficits are seen in other cognitive domains like language, judgment, reasoning, visuospatial abilities, and affecting activities of daily living.
Vascular Dementia
Another type of dementia is Vascular Dementia. Often memory problems appear suddenly due to small strokes or changes to the blood supply to the brain. If you have more strokes, the symptoms worsen. Symptoms mirror those of AD, but progression often occurs in a step-by-step fashion.
Lewy Body Dementia
Persons with Lewy Body Dementia (LBD) experience deficits in attention and executive function. Memory impairment may not be evident in the early stages, but there is fluctuating attention and alertness. Common features include: recurrent complex visual hallucinations, repeated falls and fainting, unexplained loss of consciousness. LBD patients are known to “act out” their dreams and have a difficult time distinguishing between reality and the dream world. Parkinson-like features such as balance and walking changes as well as limited affect are known to occur in LBD
Primary Progressive Aphasia
Primary Progressive Aphasia (PPA) Typical onset is under age 65. Primarily language difficulties for the first two years including: word finding, naming of objects, and understanding of speech. Other cognitive domains stay intact. As the illness worsens, less and less language is used, until the person may become virtually mute. Other cognitive domains are affected in the later stages.
Behavioral Variant Frontotemporal Dementia
Behavioral Variant Frontotemporal Dementia (bvFTD) Typical onset is under age 65. Disease affects frontal lobe of the brain which regulates behavior, emotion, reasoning, and judgment. Symptoms include: loss of empathy or apathy, disinhibition, sexual impropriety, poor judgment, compulsive-like behaviors or simple repetitive acts, verbal or motor stereotypic behavior such as lip smacking or spitting. Memory often stays intact.
Living and working with people with behavioral changes caused by a dementia
A common theme of the evening discussion, were the challenges professionals face when working with persons and families who are affected by the common behavioral changes that can occur with persons living with various forms of dementia. Those in attendance shared some very creative strategies which I have listed for you below. Please comment and add more strategies to use when facing behavioral changes.
1. Use music therapy- Music is a way we all can communicate no matter what changes have occurred. If a person with dementia related behavioral changes does something odd (spit on the drum) wipe it up and move on. It is important that we do not fixate on the “mistake” and understand that odd behaviors cannot be corrected due to the brain changes.
2. Using other forms of art- Many forms of art can be therapeutic and engaging no matter what the changes someone is going through. Even for those persons who are having visual perceptional changes, modified art projects can offer a venue of activity and expression where otherwise the individual may not have.
3. Teaching and discussing with other residents at an assisted living center that the resident who is acting odd is doing this because of a disease. Other residents may have thought that the person was simply acting rude or odd, but knowing that it was not the person but the disease acting in those ways can help to re-integrate a resident who lost his dining friends and social group due to his changes. This resident’s social group is much more accepting and understanding of his behaviors.
4. Understand where the family is emotionally as you work with them. Each person will have a different view point and ways to cope with their loved one’s changes. As professionals it will be important to understand their perspective and to support them in that place. For example, some people may have a more pessimistic view point about living with a dementia diagnosis, while others may have the approach of “live every day to its fullest”. Our interventions will depend on this perspective and we should be aware of it at all times.
What if I think one of my older adult clients may have a dementia?
Depending on the living situation and family support of the individual who you think may have a dementia, there are a few things to consider as professionals:
1. Is the older adult’s family aware of your concerns? If not, it may be helpful to share with them what you have seen and what next steps you advise.
2. Help arrange a visit to the client’s primary care physician (PCP). The PCP can be made aware of the complaint and start performing the needed tests to rule out causes of the changes you are noticing. The physician may then refer to a specialist for a full work up.
3. If your client is not aware of the symptoms you are aware of, do not fret. It is very common for the person with the cognitive changes to not be fully aware or insightful to their cognitive changes. If this is the case, it will be important to not confront this person or try to convince them they need help; often this can be a very ineffective approach and cause the person to become upset at you. Instead, help to arrange a doctor’s visit for a regular check up with the family. If possible, share with the family and PCP your concerns for the client, stressing the client’s lack of insight.
4. Always preserve your clients right to self determination. Sounds easier said than done, when you consider the safety risks for someone living with a memory impairment alone or without necessary care the gray of self determination presents itself.
I would like to learn more about Alzheimer’s disease and other dementias
The Chicago Bridge website will have regular blog articles posted in 2011 on the subject of Alzheimer’s disease and other dementias. Also, stay tuned for more discussion groups for professionals working in the field of aging and about persons living with a form of dementia. Here are a couple of websites were you can learn more about dementias:
- www.brain.northwestern.edu
- www.alz.org
- http://www.alz.org/illinois/in_my_community_professionals.asp
- http://www.nia.nih.gov/alzheimers/
PICTURES FROM THE CHICAGO BRIDGE EVENT:
*This post was edited by Bridget Murtha
Thanks to Marc Wathieu for sharing his picture on flikr.
This post was written by:
Jaimie Robinson - who has written 33 posts on Chicago Bridge.
Jaimie is a Licensed Clinical Social Worker in Chicago, IL and received her Master’s in Social Work from Loyola University Chicago. After working at the Alzheimer's Association, National Office in Family Programs, Jaimie now works as the Resource Navigator at the Cognitive Neurology and Alzheimer's Disease Center of Northwestern University. As the Resource Navigator, Jaimie works with patients and families living with a diagnosis of dementia in the Neurobehavior and Memory Clinic. Jaimie is a featured writer of the Chicago Bridge blog and is a member of the board of directors for Chicago's Society of Social Work Leadership in Health Care.
[...] Alzheimer’s disease and other related dementias (Lewy Body, Vascular dementia, and Frontotemporal dementia) have historically been difficult for clinicians to detect. However, advances in neuro-imaging, neuropsychology testing, and our increased understanding of the disease have made it somewhat easier to detect. For a more confident diagnosis, clinicians must often wait to see if and how the person with cognitive changes progresses. In other words, does the person continue to get worse? If the answer is yes, the progression likely indicates the disease to be a dementia. It can be difficult to say which form of dementia is likely, but often, if there are cognitive deficits, if it is progressive, and if there are no other causes then it is often called dementia. This may be why we hear, quite often, that a person was diagnosed with dementia in a general sense. Technically dementia is not a diagnosis, but a description of symptoms. Alzheimer’s disease, Demen…. [...]
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