Prevalence of Individuals in Middle Stage Dementia
Studies indicate that currently most individuals with Alzheimer's and related dementias are functioning in the early stage. However, in our experience we have found the greatest number of long-term care residents to be functioning in the early stage and as many, or more to be functioning in the middle stage. The number of early and middle stage residents combined can easily exceed 60% of the long-term care facility population.
While many individuals in middle stage live in a long-term care community, many also remain at home with caregiver support. However, the middle stage is the stage in which many family caregivers do make the decision to place their loved one in a facility because
- the caregiving burden becomes much greater as the person now needs 1:1 assist for even basic ADLs.
- behavior problems such as agitation, resistance to care, and wandering are quite common.
A Review of Middle Stage Dementia
Our team describes Middle Stage dementia as a person who is functioning in Allen Cognitive Level 3 or Adapted FAST stage 6 and has functional and behavioral characteristics that are similar to that of a two- to four-year-old.
Allen Level 3 review:
3.0 Grasp objects (purposeful grasp and release)
3.2 Distinguishes between objects (demonstrates proper grasp pattern on objects)
3.4 Sustains actions on objects (may look perseverative)
3.6 Notes the effects of actions on objects (cause and effect; able to sort; uses mirrors during ADLs)
3.8 Uses all objects and senses completion of an activity (may layer clothing; may cover all space, or use all objects to help determine completion)
For purpose of review, some of the additional primary functional remaining abilities at this stage are:
- Can use hands to use safe, familiar objects or tools
- Can follow a one-step direction
- Able to maintain attention to a task for limited time periods
- Can sit, stand, and walk
- Long-term memory can be accessed
The functional abilities listed above are derived from cognition. However, if a person also has another type of disability such as physical disability related to a stroke, the person may have a partial or complete deficit in any or all of the above.
Speech intelligibility in middle stage is extremely variable—anywhere from the ability to speak in intelligible phrases to speech being entirely absent. A common characteristic is what is called speaking in neologisms. I am sure you have observed this as the person is talking in a conversational tone; however he/she is not actually saying real words. We can not be exactly certain as to why speech deteriorates at such a variable rate. However, we believe it may be related in some way with how conversational the person was prior to the onset of their Alzheimer's and related dementia symptoms.
Middle Stage Treatment Techniques
I have found that the following skills are absolutely, positively necessary in order to enable the person with Middle Stage dementia to function at the highest possible level and actually use the abilities that remain.
- A friendly, positive, and patient approach
- Removal of distractions in the environment
- Placing yourself and the tools in the person's visual field
- Task segmentation—breaking an activity down into one-step parts
- Speaking in short phrases and adding visual and tactile (hands-on) cues in combination with verbal cues
- Waiting for a response
- Providing objects and activities that are in the person's long-term memory
Unfortunately, if we as therapists or caregivers miss even just one of these steps, the person in Middle Stage dementia may not be able to demonstrate his/her highest ability to function.
Let's tease out each of these techniques a bit more.
A friendly, positive, and patient approach
Each and every time you approach this patient you must be very aware of your approach. Ask yourself:
- Am I treating this person with respect?
- Am I approaching with a smile?
- Am I calm and relaxed?
- Do I wait patiently for a response?
- Am I mindful of my body positioning to be sure I make eye contact and get down on the person's eye level?
- Do I shake or hold the person's hand (if the person is OK with this) as I introduce myself and/or converse?
- Do I recognize that turning my back on this person without first excusing myself is rude?
- Do I praise any and all participation no matter how successful?
Removal of distractions in the environment
Each and every time you work with this patient you must be very aware of your environment. Look around and listen. Ask yourself:
- Is there any sound that might distract this person?
- Is the lighting good (no glare, adequate wattage, limited changes in lighting levels, etc.)?
- Is there anything that may be visually distracting, taking my patient's attention away?
- Are there any smells that might take my patient's attention away?
Of course we must perform this analysis as we prepare for our session and throughout. This is an ongoing process as things in the environment will be forever changing. Change what you can immediately. The change may be something as simple as pulling a privacy curtain or changing the person's position in the clinic. Or it may require partnership to make change such as asking permission to turn off a television or asking staff to keep their voices down. In any case, the environment can not be ignored as once attention is taken away, nothing is being processed. Therefore, success will not be possible.
Placing yourself and the tools in the person's visual field
Each and every time you work with this patient you must think about how to position objects in the person's visual field in order to capture attention. For middle stage, make certain you place an object within 14 to18 inches from eye level or it will likely be out of sight and therefore out of mind. Of course you also need to make sure you are positioned right in front of the person and making eye contact in order to gain and maintain attention.
Remember that "visual field" describes the area in which the person will purposefully look when seeking out something that they cognitively recognize they need or want.
Example: The person is sitting at a dining table and feels the need to take a drink of water. The person then looks for a cup of water. The visual space in which a person in the middle stage of dementia will look for the cup of water will likely be 14 to 18 inches from eye level. If this cup is outside of this space, it may not be seen and therefore the person will not take a drink. However, if the person just happens to be looking across the table and sees the water cup, this may trigger the desire to drink.
Identify at least one middle stage resident and observe situations throughout the day in which the world and its objects are simply "not available" because they are not within visual field.
- Identify the specific situations and objects/tools that you observed that were placed outside of visual field.
- Identify how this disabled the individual in Middle Stage dementia.
- Identify how you (or a caregiver) changed the environment to promote interaction with the objects and what the results were.
Task segmentation—breaking an activity down into one-step parts
The ability of the clinician or caregiver to take any activity and break it down into one-step parts is absolutely critical for the middle stage client. This is one of the primary reasons why this individual requires 1:1 assist with ADLs and other multiple-step activities. Unfortunately, the ability to recall the individual steps from memory, even for a very familiar task such as brushing teeth, begins to become impaired. At the higher end of level 3 the person may be able to "chunk" a few steps together. In fact, once you get them started it may appear as if you have just "kick started" memory as the person may begin chunking more steps together without cues as the activity progresses. However in low Allen Level 3 the person needs almost every step presented singly with special cues to comprehend (see below).
Task segmentation is one of the areas on the MDS (the interdisciplinary assessment tool used in Long-Term Care) to measure cognitive function. And this is often an identified "caregiver approach" in the care plan. However, to my amazement, many CNAs, activity staff, and others have not demonstrated an understanding of how to break a task down into simple parts and to appropriately cue the person through the steps. This then becomes an area of great continuing education need.
Identify two activities that have multiple steps such as "brushing teeth" or "transferring from a wheel chair onto a toilet." Then, meet with a CNA, activity person, or other caregiver and complete the following exercise:
- Identify for the caregiver what the starting point for each activity is for clarity for this activity (e.g., brushing teeth begins with the patient sitting in front of the mirror in the bathroom).
- Ask the team member to write down all of the steps for each of the above activities, naming each single step from beginning to end.
- Review their answers and make suggestions or corrections as necessary, making sure each activity step has been identified.
- How competent was the caregiver?
Speaking in short phrases and adding visual and tactile (hands-on) cues in combination with verbal cues
There is great need for a therapist or caregiver to change communication style in order to enable the person to successfully comprehend. We must shorten our phrases as the person's memory and attention have shortened.
Instead of saying, "Millie, I would like you to stand up and walk over to the closet to pick out a nice outfit for this beautiful day. Do you know it is 75 degrees and sunny today?"
Simplify this to: "Millie, please lean forward." [STOP] "Stand up." [STOP] "Walk with me." [STOP] "Open the closet." [STOP] "Would you like to wear the red or yellow outfit?" [STOP]
Of course you should have a general conversation with Millie prior to beginning your activity. At that point you can introduce yourself, discuss the beautiful day, etc. But consider the activity as separate from general conversation. The activity experience is the place in which you must really be mindful of changing your communication style to include shortening of phrases in order to facilitate the best performance and comprehension.
Pre and post conversation should not in any way be deemed as unimportant as this is very critical to building a good relationship and trust. Without this feeling of comfort, the person with Middle Stage dementia may "refuse." I understand that we get very busy and are often multitasking when we work. However, consider these points:
- Building the therapist/patient relationship can be considered part of billable time.
- Without a healthy relationship, the patient may refuse, demonstrate behavioral disturbances such as agitation, or function below his or her ability level.
In the above scenario, if Millie did not respond to any one of those short simple steps (after waiting about 10 seconds for a response), provide the verbal direction again but this time add a visual and/or tactile cue to support the verbal direction.
"Millie, please lean forward," while simultaneously providing gentle tactile input at the top of her back to lean forward.
"Open the closet," while simultaneously visually demonstrating the motor movement in close proximity to the closet door.
Activity (continued from previous section)
Continue with the same two activities that were identified in the previous activity.
- Once the activity steps have been identified in writing (Part I of this activity), ask the caregiver to actually progress a resident/client through each of the steps (make certain the caregiver has the proper skills and oversight to perform this activity in order to maintain resident safety).
- As the caregiver is sequencing the resident/client, observe the caregiver's skill in (a) speaking in short phrases, (b) providing the appropriate cueing types, and (c) waiting for a response before cueing again.
- How competent was the caregiver? Which of these techniques was most challenging for the caregiver to implement successfully?
Note: If you are a new clinician feel free to perform this activity, both Part I and Part II before you introduce this to caregivers. This is a skill that the Dementia Therapist must master and feel confident with first.
Waiting for a Response
The processing speed simply slows down as dementia progresses. You may see a latency of verbal or motor response of about 10 to 15 seconds in Middle Stage dementia. Please remember to be patient and wait before you provide another cue.
You risk overstimulation if you provide cues too quickly or at a greater volume level.
Providing objects and activities that are in the person's long-term memory
Long-term, procedural memories are the strength of a person functioning in middle stage. Therefore, it is very important to gather as much personal information about each client as possible in order to be able to introduce objects and activities from long-term memory. The utilization of long-term memory can promote greater participation as it connects to a familiar memory and taps into internal individual motivators.
Instead of working on strengthening through a typical therapeutic exercise approach, consider asking the person to move or lift items that are familiar and meaningful during a meaningful activity, through the range of motion desired for appropriate muscle strengthening.
Instead of doing the rainbow arc with a wrist weight on for UE ROM and strengthening consider placing bowls, soup cans, paint cans, etc. on a counter top and ask the person to stack them on a shelf or a cabinet. Tap into the person's interest areas to get the best participation.
I love gardening. Therefore, you could ask me to scoop dirt from a bowl into a pot and I would likely do this for you all day. Just simply position the objects appropriately to facilitate the range of motion and muscle usage desired. Then, cue me as needed to progress through each simple activity step.
Please note that the sense of smell is said to connect to our memory better than any of our senses. Therefore, consider adding as many aromas that connect to the activity as possible to facilitate better performance. Dirt has a distinct aroma which may actually be appealing for a gardener. Consider having the patient smell the dirt prior to cueing through the motor movement of each step.
Slight Performance Variation in Low Level 3 from High Level 3
Please remember that a big leap occurs between 3.4 and 3.6. Therefore, performance will be better at the higher end of level 3. Differences that you will likely observe are:
- Attention: There is more effort needed to gain and maintain attention at low 3. The person in high 3 will work longer before needing a redirection cue.
- Sequencing: There is a greater ability to chunk steps of a long-term memory activity together at high 3.
- Cueing: There is more need for visual and tactile cues to support verbal cues at low 3.
- Use of Objects: There is more efficient use of tools and objects in high 3 and better fine motor coordination.
- Long-Term Memory: There is better recognition of faces and objects from long-term memory at high 3.
Individuals who are functioning in middle stage can demonstrate high levels of participation in therapy and life, but only when enabled with the correct approaches and with the necessary environmental and activity adaptations.
Therapists, professional caregivers, and personal caregivers must all be skilled in implementing the techniques described in this article or we risk creating "excess disability" and behavior problems. If any one of these techniques is not implemented the person will not be able to perform at his or her best ability.
Be careful not to overestimate the skills of the caregiver in working with the person with Middle Stage dementia. Also, don't underestimate the abilities of the middle stage individual. As a practicing clinician I have certainly made these mistakes along the way and it pains me to now know that I may have missed an opportunity to help.
What an amazing opportunity we have been given. We are in the position of using our hearts and knowledge to enable individuals with advanced dementia to live! To laugh! To feel purpose!
Feel the difference that your efforts make in the life of another. You have the opportunity to give the gift of quality of life each and every day.
I hope that you found this article of interest and encourage you to perform the activities contained within. Please share your activity experiences through May 31st in our Forum. This will enable our community members to learn from one another.