1. Understanding Changing Needs of Persons with Dementia
Partnerships to Improve Care and Quality of Life for Persons with Dementia
Welcome to the 2nd presentation in the series on Partnerships to Improve Care and Quality of Life for Persons with Dementia.

2. Goals of Training Goals for series
Enhance family involvement in the daily care of loved ones with dementia
Promote person-centered care
Goals for today
Review types and stages of dementia
Discuss the Need-Driven Behavior model
Use a 1-minute assessment to respond to challenging behaviors
The goals for today are to review how the type, and stage of dementia influence how the person functions over time. These changes may be confusing to both staff and family caregivers, and may become a source of stress in providing daily care.
We’ll also introduce a model for understanding challenging behaviors that often accompany dementia. Using a 1-minute assessment that is based on the Need-Driven model can help caregivers better understand challenges, and respond in a way to calm and comfort the person.
Let’s start by reviewing the different types of dementia.

3. Types of Dementia
Dementia: general term for a decline in mental ability that interferes with daily life; many different types
Alzheimer’s disease: the most common form of dementia
Memory loss/problems are key symptom
Steady, gradual decline in abilities over time
Dementia is a general term that is commonly used to describe a wide variety of different types of dementia. All types of dementia have some shared characteristics, but each also have key differences that can confuse both staff and family caregivers.
Alzheimer’s disease is the most common type of dementia, but not all dementia is Alzheimer’s type! That means, not all will have memory problems as the main loss, or have the steadily progressive, gradual decline over time that occurs in Alzheimer’s.

4. Types of Dementia Vascular Dementia (VD) Lewy Body Dementia (LBD)
Early: Impaired judgement; problems planning, making decisions, organizing
Blood vessel damage in brain, strokes
Step-wise loss for some; gradual for others
Lewy Body Dementia (LBD)
Early: Fluctuating confusion, alertness
Movement: tremor, stiffness, slowness, walking
Visual hallucinations; sleep disturbance
Early changes in Vascular Dementia often relate to judgement, planning, organizing, and making decisions, as opposed to memory loss. The loss of abilities is related to damage caused by cerebrovascular events, or strokes, in large and tiny blood vessels in the brain.
Changes can be “step wise”– which means a sudden loss of ability that alternates with fairly stable periods. This alternation can be confusing to caregivers. In other cases, vascular dementia causes a gradual loss of abilities much like Alzheimer’s disease.
Those with Lewy Body Dementia are more likely to have an “up and down” confusion early in the disease – meaning that sometimes they are “clear” and other times they are very confused. Problems with movement is characteristic of Lewy Body Dementia, including tremors, stiffness, slowness, and difficulty walking.
Visual hallucinations -- seeing things that aren’t there, and problems with sleep are also common problems.

5. Types of Dementia Frontal Temporal Dementia (FTD) Many other types
Early: Significant personality & behavior changes
Impaired judgment, self-care, insight, language
Most stressful type
Many other types
Brain injury, HIV
Substance/medication-induced
Parkinson’s, Huntington’s
Mixed/Multiple causes
Tailor approaches to individual needs!
Persons suffering from Frontal Temporal Dementia also don’t experience memory problems early in the disease process. Instead, changes in personality and behavior are the first symptoms.
Common problems include poor judgment, self-care deficits, lack of insight, difficulty communicating, repetitive movements, and changes in eating habits. These changes are hard to understand and to manage, and cause a lot of stress for caregivers. In fact, Frontal Temporal Dementia can be considered the most stressful of all types of dementia.
In short, there are many types of dementia, and each is different from the others in some important ways. Main symptoms and behaviors will vary based on the type, and differences occur from person-to-person even if they have the same type of dementia! That means that the best care is tailored to fit individualized needs!

6. Stages of Dementia Consider the “stage” of disease Early Middle Late
Another important consideration in understanding changing needs is the stage of dementia. Although the stages we describe here are for Alzheimer’ disease, most types of dementia have similar behaviors in the middle and later stages.

7. Early Stage
Trouble remembering names, losing or misplacing objects, difficulty planning or organizing.
Blames stress, fatigue
Compensates with lists, memory aids
Depression common
Note! Memory loss is not the first problem in all types!
In the early stage of Alzheimer’s disease, problems with memory result in difficulty remembering names, doing common tasks or chores, and losing or misplacing things. They may be aware of their problems, but tend to blame stress or other sources, and compensate for lost abilities by using lists or other memory aids.
Clinical depression is common and can make memory loss seem worse than it really is. However, treating depression in the usual ways, with medication and therapy, will “restore” memory problems that are the result of depression.
As we just reviewed, memory problems are not early symptoms in all types of dementia. The changes your loved one is experiencing may not look like Alzheimer’s type dementia – but it might still be dementia!

8. Middle Stage Disorientation to time, place, person, things
Problems in daily function become apparent
Bathing, grooming, dressing, mobility, toileting
Language; problems communicating needs
Behavioral/psychological symptoms more common
Frustration, anger, cursing, name-calling
Resistance to care, wandering, difficulty eating
In the middle stage, the person becomes increasingly disoriented, or confused about
Time, including time of day, week, season or year,
Places,
Persons, including family members, close friends, and regular caregivers, and
Things, like what common objects really are, and how to use them.
Problems in daily function become apparent to everyone, particularly family members. The person loses their ability to do personal care activities – like bathing, grooming, dressing, walking, toileting and using language to communicate needs. This causes stress in relationships as family and other caregivers need to take over chores, help the person perform usual activities, and to be safe.
Behavioral and psychological symptoms often occur in the middle stage, which is typically the longest and most challenging stage, and the point where family may begin to reach out for services and assistance.

9. Late Stage
Little ability to respond to environment, carry on conversation, or control movement
Engages in little purposeful activity
Complications are common: choking, falling, others
Extensive assistance with daily activities and personal care is needed
In late stage dementia, a majority of the person’s abilities to think, communicate and function are lost. This stage is also called “terminal dementia” because the person loses the capacity to engage in nearly all meaningful activities, and is dependent on others to anticipate their needs and provide hands-on care.
Complications, such as choking, falling, and weight loss, become more common over time. Extensive assistance and supervision is required in late stage dementia, and quality of life tends to suffer – which can be difficult for family members.
Later in the series, we’ll talk more about end-of-life planning to ease stress with decision-making about care options. For now, let’s go back to behavioral symptoms that often occur in the middle stages.

10. Challenging Behaviors
Stable individual factors
Dementia type, stage of disease
Longstanding personality, habits, traits
Physical function, disabilities
Fluctuating environmental factors
Personal needs: physical, social, emotional
Physical environment: noise, confusion
Although it’s common to blame dementia itself for challenging behaviors; lost abilities are really just part of most challenging behaviors. The Need-Driven Dementia-Compromised Behavior, or NDB model for short, helps explain how fairly stable factors interact with changing environmental factors to cause problematic behaviors.
Individual factors are relatively stable and unique to each person. As we just reviewed, the type and stage of dementia will influence the kind of behaviors observed. Long-standing personality, habits, and traits, and other physical health issues can contribute to behavioral problems. Family input on these factors can be really helpful since they often know about long-standing traits, habits, and also health problems.
Of equal importance, challenging behaviors can be caused by environmental factors, which include all the things going on within the person, and around the person.

11. Need-Driven Dementia-Compromised Behavior Model
Individual factors [Stable]
Environmental factors [Fluctuating]
Cognitive function
Physical function
Longstanding personality
Habits, traits
Physical needs
Psychological needs
Social environment
Physical environment
Behavioral & Psychological Symptoms
This diagram of the NDB model shows how individual and environmental factors can DIRECTLY cause challenging behaviors, and how each also INTERACTS with the other to cause problems.
Although we often can’t change the stable individual factors, we can influence factors in the person’s environment. For example, physical needs include things like hunger, pain, being cold, or needing exercise. Boredom and loneliness are common unmet social needs. The physical environment includes things like television, too many people talking at once, lighting that is too bright or too dim, and much more!!
These factors continuously change and interact with longstanding abilities and preferences. By identifying and addressing unmet needs, caregivers can often reduce or prevent troubling behaviors, – AND help to provide comfort to the person with dementia!

12. Need-Driven Model Behavior is communication of unmet needs
Start by describing the behavior
Who, what, when, where, how long/often?
Who is affected by the problem behavior?
What “triggers” can be changed to prevent the behavior?
What responses or reactions comfort the person/reduce the behavior?
Behaviors are a form of communication, and often signal an unmet need. Comfort and quality care for the person with dementia relies on caregivers paying attention to what is going on within the person, and in the environment.
Problem-solving starts with “taking a minute” to really understand the behavior. Look for the who, what, when, where, how long, and how often. Also ask: Who has the problem? Is it the person with dementia? Or others around them, such as a family member, another resident, or the staff caregiver?
Then, think about what might have led to the behavior. Think about possible unmet needs, and what the person may be experiencing based on the environment. What can be changed? Or reduced? Or done differently to reduce the person’s distress?
And last, think about reactions and responses to the behavior – particularly negative ones that might keep the problem going, or even make it worse. And in contrast, what kind of positive responses – like reassurance, or distraction, or stopping an activity – help comfort the person and reduce the behavior?

13. What does the behavior tell you?
Take a 1-minute assessment
Wandering?  Boredom?
Calling out?  Loneliness?
Grabbing?  Fear of pain?
Pushing?  Desire for privacy?
Agitated?  Over-stimulation?
Withdrawn?  Under-stimulation?
Intrusiveness?  Hunger, thirst?
Many possibilities!
Many behaviors that are labeled as problems are the result of unmet physical, emotional, and social needs. “Taking a minute” – meaning pausing and really thinking about what is going on and why -- can really help the person with dementia, but also, the caregivers and others around the person.
By thinking about behaviors as communication, caregivers can often respond in ways that reduce negative behaviors, and also help the person experience more positive and engaged behaviors.
For example: A person who seems to be “wandering” may be bored, or they might just enjoy walking. Ask: What time of day does the behavior occur? Where does it occur?
What activities might reduce the need, such as supervised walking or an enjoyable activity? Meeting unmet needs AND adding something pleasurable to do as an alternative can often prevent challenging behaviors.

14. Use the Need-Driven Model!
1-minute assessment: Your approach
Be aware of communication
Is it too long? Too much? Too fast? Too complicated?
Are your expectations realistic?
Focus on the person vs. the task
Use preferred routine, preferences
Consider personality
Explain what you are doing
Be aware of personal space, sense of privacy
As you “take a minute” to understand the behavior and what might be contributing to the problem, pay close attention to how your approach can help – or possibly make things worse.
Caregivers’ communication style and approach makes a big difference in whether the person feels calmed and reassured, OR like they are “in trouble” or being scolded.
Slow down, think about both your verbal and non-verbal messages, and work to focus on what the person needs RIGHT NOW to feel calmed, and hopefully distracted to another more enjoyable activity.

15. Use the Need-Driven Model
1-minute assessment: Adjust next steps
Misinterpretation? Use the person’s reaction; change course to reassure & calm
Reoccurring? Brainstorm possible causes and interventions
Look for patterns and document habits
Rule out medical or physical problems
Re-evaluate frequently
Also, pay close attention to what is going on in the environment. Ask yourself: What can we change to keep this from happening again?
Think about possible misinterpretations and how you can best restore the person’s comfort level. That might mean moving the person to another area or room if you can’t change what is going on around the person.
If the behavior tends to re-occur over time, discussion and information-sharing among staff and family may help identify longstanding habits that are part of the problem. For example, trying to “leave” at a certain time of day might be to get the mail, do chores, or leave for work.
The environment also includes the “internal” or personal experiences –so think about new AND old medical or physical problems that can cause pain or other distress.
Also remember to re-evaluate frequently! What works today may not work tomorrow, or sometimes the fluctuations may be hour-to-hour, or morning-to-evening.
Also remember to re-evaluate frequently! What works today may not work tomorrow, or sometimes the fluctuations may be hour to hour, or morning to evening.

16. Discussion Breakout
Imagine you are leading an activity when one resident becomes upset-crying and yelling for others to get away from her.
What might be possible triggers and how would you best approach/provide support?
Let’s continue to think about the 1-minute assessment related to individual factors such as personal likes or dislikes, and past memories, as well as environmental factors like noise, and lighting in a breakout discussion.
In this situation imagine that you are leading a balloon activity on Christmas Eve when one resident who typically loves this game appears upset. She starts crying and when you approach her she yells to get away from her. What might be some possible triggers for this emotional response and how would you approach her to provide support?
Please pause the presentation now, and then start it back up when you are ready to continue.

17. Summary Type and stage of dementia matters in care
Progressive decline means ever-changing abilities!
Constantly monitor expectations & approaches
Stable & fluctuating factors interact to cause challenging behaviors
Assess the person and situation
View situations from the person’s perspective
Adjust your approach to care
Work to prevent problems
In summary, understanding changing abilities, needs, and behaviors is often challenging for everyone involved. Because each person’s experience is unique, there are no “rules” on what to expect and when. This uncertainty can lead to unrealistic expectations about what the person with dementia CAN do, and contribute to stress and conflicts about best care practices among staff, and between staff and family members.
Understanding changing needs often relies on the type of dementia the person has, and the stage of dementia the person is in. As the Need-Driven Behavior model emphasizes, those dementia-related changes interact with both longstanding characteristics AND ever-changing environmental factors.
Using the Need Driven Behavior model helps caregivers assess the person and the situation, and then tailor interventions and approaches to meet the person’s needs. “Taking a minute” to think carefully about behaviors, and working to understand the situation from the viewpoint of the person with dementia is key.

18. Coming up next Role Changes for Family Members
Explore the role changes and stressors family caregivers face
Consider how those changes impact relationships with providers
Discuss approaches to ease tensions and build positive relationships with family caregivers
In our next presentation, Role Changes for Family Members, we’ll explore changes, stressors, and emotional reactions that family caregivers often experience. These changes may affect interactions with providers, and are important to understand in order to build partnerships with family members.