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Section 4

Buckle Up: Living with Dementia

Understanding Behaviors and Tips for Managing Them

What are dementia-related behaviors?

Remember, if you’ve seen one case of dementia, you’ve seen one case of dementia. Everyone is different, but here are some behavioral bumps in the road that are common to the different stages of dementia:

Mild

Moderate

Severe

Mild

Memory loss

  • forgetting recent events, misplacing items, or struggling to recall names or details

Difficulty with complex tasks

  • such as managing finances or planning an activity

Communication changes

  • repeating oneself, difficulty finding words, loss of train of thought

Mood and personality changes

  • Mood swings, irritability, increased anxiety or frustration, becoming more withdrawn or less interested in social activities

Apathy

  • decreased motivation for activities they once enjoyed

Moderate

Memory impairment

  • not recognizing familiar people or places, frequently asking the same questions

Disorientation

  • wandering or getting lost, disorientation regarding time, place, or one’s own identity

Language and communication

  • difficulty following or participating in conversations, resorting to nonverbal communication

Behavioral changes

  • agitation, aggression, disruptive behaviors, hallucinations, delusions

Incontinence

  • loss of bladder or bowel control

Decline in self-care

  • difficulty dressing, bathing, or eating without assistance

Severe

Severe memory loss

  • not recognizing close family members, living predominantly in the past

Communication breakdown

  • nonverbal or only able to use a few words or phrases

Loss of motor skills

  • significant decline in mobility, difficulty swallowing

Behavioral challenges

  • agitation, aggression, sundowning (increased confusion and restlessness in the late afternoon or evening), resistance to care

Emotional changes

  • blunt emotional responses or appearing to lack emotion

Loss of independence

  • full-time assistance is needed with all daily activities

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What triggers dementia-related behaviors?

Behaviors most often stem from three different buckets of triggers: emotional, physical, and environmental. If we can identify and appropriately manage the trigger, we have a better chance of keeping those behaviors from escalating:

Emotional

Physical

Environmental

Emotional

FRUSTRATION

DISORIENTATION

LONELINESS

FEAR

BOREDOM

ANXIETY

Physical

HALLUCINATIONS

DELUSIONS

SLEEP ISSUES

PAIN

URINARY TRACT INFECTION

DEHYDRATION

Environmental

OVERSTIMULATION

CARE PARTNER’S APPROACH

UNMET PERSONAL NEEDS

MEDICATION MANAGEMENT

FEELING ISOLATED

FEELING RESTRICTED

For example:
Every day at 3pm, Mom gets ready to pick up the kids from school. Problem is: you’re her kid, and you’re 42. It's challenging to redirect her as she becomes adamant that she will be late. Knowing that 3pm is a trigger time, encourage a snack and a pleasurable activity at 2:30, that can distract and redirect from the 3pm trigger.

How to recognize dementia-related behaviors and determine if they are expressions of unmet needs:

It’s important to explore dementia-related behaviors as the possible expression of unmet needs. Likely, your person’s goal is not to drive you crazy but to express themselves, which can get increasingly challenging as the disease progresses.

Think of it this way - if you, as you are today, had a word at the tip of your tongue, you can tell someone “ooh, it’s on the tip of my tongue.” If you had a dementia, and you were trying to express yourself, and the words didn’t come out right, and you couldn’t tell someone, you might show them your frustration. In the absence of words, we act.

There’s a ton of information out there when it comes to understanding dementia-related behaviors. We know you’re busy, so we found the best of the best resources for you.

Non-pharmacological approaches to managing behaviors:

Non-pharma-what? Non-pharmacological approaches are those that do not involve the use of medication.

Examples of non-pharmacological approaches include:

  • Behavioral Modifications (establishing a structured daily routine)

  • Environmental Modifications (reducing noise or removing hazards)

  • Cognitive Stimulation (puzzles, memory games, reminiscence therapy)

  • Art, Music, and Other Creative Therapies

  • Pet Therapy

  • Sensory Stimulation (aromatherapy, massage)

  • Physical Exercise

  • Social Engagement

  • Caregiver Education and Training

Pharmacological approaches to managing behaviors:

You guessed it, this means approaches that include medication. If non-pharmacological interventions have been exhausted and behaviors are severe enough to impact your person’s quality of life or safety, medication could come into play. It's very important that at this stage, should you enter it, your person’s medications are carefully and continuously monitored and adjusted with the help of a healthcare professional. The potential benefits of medication should always be weighed against the potential risks and side effects.

Some common pharmacological approaches to dementia-related behaviors include:

  • Antipsychotic Medications (to manage agitation, aggression, and psychosis)

  • Antidepressant Medications (to manage depression, anxiety, and agitation)

  • Sedative-Hypnotics (to manage sleep disturbances)

There are other drugs that are primarily used to treat the cognitive (vs. behavioral) symptoms of ADRD. While they do not specifically target behaviors, improving cognitive function may indirectly reduce some behavioral symptoms.

Changing Care Needs

We’ve said it before, but it’s worth repeating: dementia is not a one-size-fits-all condition. It’s different for everyone and even for each individual, the road changes constantly. One step toward not totally freaking out is learning to manage expectations: there WILL be MANY changes as time goes on.

Quick Tips for Managing Change:
  • Having ongoing, open conversations with the medical professionals on your squad.

  • Find a way to track your person’s changes over time that’s easy for you. It might be a journal that you and other members of your squad use to write daily entries so you can spot trends. Or, you can use an online platform such as CareVirtue to enter daily journals and updates, tag the behaviors, and rate days using an emoji scale. You can even run a search based on all of the smiley faces or frownie faces and export those entries for your healthcare team.

  • Be honest with yourself about what your person needs, what you are willing to do, and what you are capable of doing.

  • Give yourself permission to ask for help.

Changing Care Settings:

As your person’s needs change, their setting may need to change accordingly. Here are some common care settings:

Day Programs

Day programs can be great for social engagement, and a break for you. Many include meals and organized activities tailored to the needs of people with ADRD. Read more:
A Guide to Memory Care Day Centers

Memory Cafes

Is this really a thing? YES! And if you can find one along your journey, it might be worth the stop! Memory Cafes are designed specifically for individuals with Alzheimer’s Disease or any other form of dementia, or other brain disorders. Cafes are also set up to provide a space and a break for care partners too. Learn more and see if there is one near you!

Residential Settings

Residential settings include nursing homes, assisted living, memory care, and group homes. Residential settings provide a high level of care and can reduce the burden on care partners. While this isn’t always an easy or affordable option, it can improve the quality of life for everyone involved.

Assisted Living Locators

These services specialize in helping you navigate the often complex and overwhelming process of finding appropriate living arrangements. In short: they do the leg work for you. They will research your options, make appointments for tours, and help get answers to your questions. In most places, Assisted Living Locators are independently run companies, so you might pay an initial screening fee. Then, if you choose one of the places your locator found for you, they receive a finding fee from the facility - so they are incentivized to make a good match for you. As always, do your homework before contracting with someone. The Better Business Bureau is always a good resource to check a company’s credentials. You can also ask for references!

Nutrition & Hydration
Quiz Time!

What is your guiltiest pleasure, only-on-a-road-trip snack of choice?

(Okay, this isn’t a quiz, we just want to know.)

“Yum! Good choice!”
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Poor nutrition for individuals with dementia is like a road trip without snacks. Unthinkable!

Tips for maintaining the health and well-being of your person via nutrition.

Maintain a Routine:

Establish regular meal and snack times to provide structure and predictability, which can help reduce anxiety and confusion.

Balanced Diet:

Aim for a balanced diet that includes a variety of foods from different food groups, including fruits, vegetables, lean proteins, whole grains, and dairy products.

Texture-Modified Foods:

As dementia progresses, individuals may have difficulty with chewing and swallowing. Consult a speech therapist or dietitian for guidance on texture-modified diets, such as pureed or soft foods, to prevent choking or aspiration.

Hydration:

Offer easy-to-eat finger foods like cut-up fruits, vegetables, or sandwiches to make eating more manageable for those with motor skill difficulties.

Finger Foods:

Offer easy-to-eat finger foods like cut-up fruits, vegetables, or sandwiches to make eating more manageable for those with motor skill difficulties.

Minimize Distractions:

Create a calm and quiet dining environment to reduce distractions, which can help individuals focus on their meals.

Adapt to Preferences:

Cater to the person's preferences and cultural background when planning meals. Familiar and favorite foods can be comforting and encourage eating.

Supplements:

Some individuals may benefit from vitamin or mineral supplements, but these should be recommended by a healthcare provider.

Monitor Weight:

Keep an eye on your person’s weight. Weight loss is common in dementia, but shouldn’t be ignored. Consult a healthcare professional if significant weight loss - or gain - occurs.

Food Safety:

Ensure that the food is safe to eat by checking expiration dates and maintaining proper food storage and hygiene practices.

Special Diets:

If the individual has specific dietary restrictions or medical conditions, work with a healthcare provider or dietitian to develop a suitable meal plan.

Medication Interactions:

Be aware of any medication interactions with food. Some medications may require adjustments in meal timing or type of food consumed.

Be Patient:

Eating can become a slower and more challenging process for individuals with dementia. Be patient, and avoid rushing or pressuring them to eat quickly.

Regular Dental Care:

Good oral hygiene and regular dental check-ups are essential for maintaining oral health, which can impact eating abilities.

Did you know that
oral health = heart health = brain health?

Research suggests there is a link between poor oral health and cardiovascular disease. Bacteria in the mouth can travel through the bloodstream and potentially contribute to the development of conditions like endocarditis (infection of the heart's inner lining) and atherosclerosis (clogged arteries). The inflammation and infections associated with gum disease, in particular, can exacerbate heart health issues.

Emerging research is also exploring connections between oral health and brain health. Some studies suggest that chronic gum disease and inflammation may be associated with a higher risk of cognitive decline and conditions like ADRD. The exact mechanisms of this relationship are still TBD, but it’s safe to say that a healthy mouth could support a healthy brain. So, schedule that cleaning!

Record and Observe:

Keep a food diary to track eating habits and identify any patterns or changes in appetite. Share this information with healthcare providers.

Seek Professional Help:

If you have concerns about the individual's nutrition, seek guidance from a registered dietitian or healthcare professional who specializes in dementia care.

Hey what about ME?

Whether you share genes with the person you’re caring for or not, you may be wondering, “how do I protect MY brain?” Well, good news. You can do both at once! Living a brain-healthy lifestyle today can help reduce the risk of developing Alzheimer’s disease and related dementias tomorrow.

Research suggests that 4 in 10 cases of dementia disease may be preventable by adopting specific habits. Because Alzheimer’s can begin to develop 20-30 years before the onset of symptoms, there is no better time than NOW to start building a more dementia-resistant brain.

We’ve broken it down for you in 5 easy steps.

Ideas for Engaging with your Person through Alzheimer’s

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Improv
Music

Pro Tip: Have a moody teenager? This is a great way to engage them in the care of your person! Looking for more? Meet our friend Tara from Harmony in Dementia for more tips and personalized services.

Aromatherapy

“Olfactory stimulation” refers to the activation of the sense of smell through exposure to various odors or scents. Purposeful olfactory stimulation - AKA aromatherapy - can reduce stress, anxiety, and even energize individuals with dementia. It’s important to note that some individuals may become hypersensitive to smell as a result of their dementia, so keep that in mind. There are a variety of ways that aromatherapy can be incorporated, including diffusers, lotions, or sprays. Different scents can assist in the transitions of the day. For example, citrus in the morning to energize, lavender in the evening to destress and wind down for sleep.

Explore More:

Movement

Giving a person activities to engage in, places to go, and a daily purpose can meet their needs and lead to a reduction in dementia-related behaviors. If your person is wandering or pacing, they may need to move (or maybe that this party sucks and they need a change of scenery.) Purposeful movement allows an individual to move safely and get their energy out. This can look like a walk around a track, garden, or local park. When a person remains sedentary and disengaged, it impacts their body and their mind. Let’s Move with Zinnia TV.

Art & Play

Art and play projects can create a sense of accomplishment and purpose. They can provide the person with dementia — as well as caregivers — an opportunity for self-expression. Many local museums have access programs available for individuals living with dementia, where they can discuss the art they are viewing and also participate in art making. If getting out isn’t an option, meet the team at Gleam in Your Eye, a subscription service that sends meaningful activities direct to your home, designed specifically for people living with dementia.

If you've seen one case of dementia, you've seen one case of dementia.

While everyone is different, dementia-related behaviors most often stem from one of three types of triggers: emotional, physical, and environmental.

You can manage dementia-related behaviors with pharmacological (medication) or non-pharmacological approaches.

Quick Tips for
Managing Change
  • Be open with the medical professionals on your squad.

  • Track your person’s changes over time.

  • Give yourself permission to ask for help.

Nutrition Tips:
  • Maintain a Routine

  • Support a Balanced Diet

  • Focus on Hydration

  • Minimize Distractions

  • Adapt to Preferences

  • Record and Observe

  • Seek Professional Help

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