Life Care Planning

Among the many challenges dementia caregivers face, assisting with eating is a difficult and sensitive aspect. It demands a soft touch. A person-centered approach, if you will. We’ll always advocate for person-focused care, regardless of your loved one’s condition – but ESPECIALLY when it comes to eating assistance in late-stage dementia. 

They won’t eat. If your loved one has transitioned into end stages of Alzheimer’s or another type of dementia, you’re definitely getting familiar with this. You’re concerned for their weight loss. Are they in danger of entering the “failure to thrive” category? Which begs the next logical question: How much time is left?

In this exploration, we dive into the complicated world of late-stage dementia. We discuss not just the challenges, but, more importantly, the empathetic strategies that honor the individual’s dignity and well-being when addressing dementia-related eating difficulties.

Understanding the Challenges: Why Eating Becomes Difficult

Dementia is a thief – and it’s so much more than memory loss. It steals functions and abilities until there’s nothing left. 

You know this. So why do I say it? Because like so many of those regressions, consequences like not being able to eat well aren’t just the result of “forgetting to eat.” Sure, in earlier stages of dementia, a loved one may lose track of time and more frequently forget meal times. In latter stages, eating independently becomes difficult because of: 

• Cognitive decline
• Motor skill deterioration
• Sensory changes
• Emotional states
• Confusion & disorientation
• Physical ailments

All of which cause a range of difficulties all their own, from recognizing food to coordinating the physical movements required for eating. Person-centered care requires understanding that these challenges are not intentional refusals, but manifestations of the profound cognitive changes occurring.

Through this understanding, you can build a better life-care plan delivering solutions that work to keep your loved one living with end-stage dementia happy and healthy – living a life worth living.

Person-Centered Solutions to Eating Assistance in Late-Stage Dementia

Of course, there are precautions that must be taken – like switching to nectar-thick or honey-thick liquids to ease swallowing. But these are solutions that can make the dementia-care environment more hospitable to your loved one.

1. Create Comfortable Surroundings

Ensure the dining area is calm, well-lit and free from distractions. The nature of dementia is confusing. Your loved one may not know how to process a busy dining room or even a TV in the background in their own bedroom.  

Minimize noise and disturbances, allowing the individual to focus on the act of eating. Familiarity is key, so incorporate personal items or mementos that evoke positive memories.

2. Offer Familiar & Favorite Foods

Late-stage dementia might alter taste perceptions, making once-loved foods unappealing. Experiment with a variety of textures and flavors to identify those that resonate. If they favor a certain food that would now be a choking risk, it can always be chopped or pureed.  

And as I always say, involve the person in meal-planning discussions earlier in the life-care planning process to learn and document their preferences.

3. Adapt Utensils & Tableware

Motor skills decline significantly late in the dementia journey. Conventional eating utensils will be challenging to use. 

Explore adaptive utensils designed for ease of use. Consider plates with high edges to aid scooping, and weighted utensils that provide sensory feedback, enhancing control and coordination.

4. Encourage Independence with Assistance

Empower the individual to feed themselves as long as possible. Eventually, this will be impossible and they will require feeding. But before that day, offer assistance based on their cues. It might involve guiding their hand to the utensil or offering verbal prompts. 

Celebrate small victories and acknowledge their efforts.

5. Maintain a Routine

Establishing a consistent eating routine can provide a sense of predictability, reducing anxiety and confusion. Even if your loved one can no longer read a clock, their intuitive senses that operate alongside their circadian rhythm may chime in to indicate, “Hey, it’s lunchtime.” Now, that won’t always contribute to their apparent appetite, but managing daily tasks in such an order typically does more to help than not.

Serve meals at the same time each day and maintain rituals associated with dining. This familiarity can evoke comfort in the face of cognitive challenges.

6. Hydration is Crucial

Dehydration is a common concern for people in end-stage dementia. If they’re not eating, they’re likely not drinking. 

Ensure your loved one receives an adequate intake of fluids. Experiment with different types of cups or straws that facilitate sipping. Infuse water with subtle flavors, like a hint of citrus, to make it more enticing.

7. Monitor for Discomfort or Pain

Pain and discomfort in end-stage dementia often goes undetected due to communication barriers. That, too, can hinder the eating process. 

Watch for signs of discomfort, such as grimacing or agitation. Collaborate closely with healthcare professionals to address any underlying pain issues.

8. Embrace Flexibility

Understand that each day might present different challenges. We mentioned the importance of routine, but always be open to flexibility in your approach. Some days it’ll work; some days meals will consist of only a few sips of a fortified protein shake. 

(And there’s absolutely no use in force-feeding a person who can’t help any of this.) 

Daily feeding routines must adapt to the individual’s mood, preferences and physical capabilities – which may change day to day and even hour to hour. A person-centered approach is about responding to the unique needs of the individual in that moment.

A Nourishing Approach for Loved Ones with Dementia

A person-centered approach to eating assistance in late-stage dementia is about fostering an environment that respects the individual’s autonomy, preferences and inherent dignity. It’s an ongoing journey of discovery, adapting strategies to align with the ever-changing landscape of Alzheimer’s and other types of dementia. 

As devoted care partners, our role is not just to nourish the body but, more profoundly, to nurture the spirit, ensuring that every meal is a moment of connection and comfort amidst the challenges of late-stage dementia care.

I understand the difficulties from multiple perspectives, as a Board-certified Patient Advocate and the life partner/care partner to my Brian on his journey with Alzheimer’s disease and vascular dementia. Let me help you navigate these realities!

In end-stage dementia, pain often wears a cloak of invisibility, sometimes even to the trained eye. Last month, we discussed how your loved one may be “here, but not here.” Naturally, with those dual realities come communication issues and confusion. Dementia care pain management touches the core of compassionate caregiving.     

Unfortunately, care partners are often operating in the blind.

On the most challenging part of this journey with our loved ones – in which communication becomes a silent art – understanding and addressing their pain and discomfort becomes arguably the greatest priority. In today’s blog, we explore “making them comfortable” in end-stage dementia, the common hurdles and some gentle strategies to deliver comfort.

Dementia Care Pain Management: Unveiling the Silent Struggle

By the end stages of Alzheimer’s and other types of dementia, your loved one has lost most, if not all, of their functional and cognitive capacities. Movement and mobility may be difficult (or impossible). Verbalization may be difficult (or impossible). Memories of any type are distant (or gone). 

Loved ones likely will not express discomfort in recognizable ways, leading to a profound challenge in identifying and addressing their pain. In recent months with my life partner/care partner, Brian, in advanced-stage dementia care, communicating his pain and discomfort has taken on characteristics that seem odd and irrational – even venturing into outright aggression. 

While these are beyond control, it’s our duty as care partner team members to decipher the silent (and not-so-silent) cues to provide comfort in the midst of this silent struggle.

Navigating the Hurdles: Why Pain Goes Unrecognized

Developing a better understanding always helps to make a better life-care plan! By preparing for the hurdles that hinder pain management in dementia care, we can ultimately become better caregivers in a time when our loved ones need it most. 

Let’s explore these challenges in greater detail: 

Limited Communication

Verbal communication is impaired, limiting the avenues through which individuals can express pain. Our loved ones often rely on alternative, non-verbal methods to convey pain and discomfort. They may grunt, grimace or gesture. Much like with a baby crying, it’s unclear what exactly they need.

Cognitive Decline

Cognitive decline blurs the ability to connect physical sensations with expressions. As dementia progresses, the intricate network of neurons controlling cognitive function deteriorate greatly. Individuals with advanced dementia may struggle to recognize, interpret or associate discomfort with the need to express discomfort through recognizable gestures.  

Fear & Anxiety

Here’s one we haven’t discussed too often: fear and anxiety. Experiences in late-stage Alzheimer’s and other types of dementia are fraught with frightening experiences – from simply navigating a world that no longer makes sense to night terrors and even hallucinations. 

Enter physical pain into that equation, and your loved one might be downright scared into inaction. Anxiety about medical interventions may lead to non-disclosure or greater difficulty expressing pain.

Misappropriation of Symptoms

Care partners themselves may attribute behavioral changes to the natural progression of dementia, overlooking pain as a cause. From experience, it’s easy enough to believe a behavioral outburst is a symptom of a deteriorating mental state rather than a loved one saying as best they can, “I may be developing a bed sore. Please help me move.”

A Compassionate Approach to Pain Management in Dementia Care

With this better understanding, let’s try some gentle strategies to improve our dementia care pain management. Nurture comfort; promote well-being.

Conduct Regular Pain Assessments

Consistent and comprehensive pain evaluations are paramount in end-stage dementia care. Utilizing specialized observational tools tailored for individuals with dementia, caregivers can systematically assess signs of discomfort or distress. As a care partner, you can learn these skills yourself AND advocate for them with professionals in facility settings.

These tools may include:

• Detailed checklists
• Visual analog scales
• Facial expression recognition charts
• & Others

By incorporating these assessments into routines, care partners can gain a nuanced understanding of the person’s pain experience and evolving needs over time.

Facilitate Comforting Environments

Create soothing surroundings to minimize pain triggers, promoting a sense of calm. You understand your loved one’s preferences, sensory sensitivities and creature comforts. A well-prepared life-care plan factors these to guide professionals entrusted with their care. 

Begin by personalizing the living space with:

• Familiar objects
• Comfortable seating & bedding
• Cherished mementos
• Calming lighting, colors & smells 

Sensory stimulation (steering clear of OVERstimulation) must be a key consideration. Light and sound sensitivity are common with Alzheimer’s and dementia. Music therapy also helps. Curate playlists featuring the individual’s favorite tunes or simple, calming melodies. 

Tailor Pain Management Plans

Each person has different thresholds and responses for pain. Work with healthcare professionals and mobilize hospice services to design personalized pain plans considering unique needs. Pain management for dementia care requires a comprehensive understanding of their medical history, prior pain thresholds and responses to various treatments.

Solutions might involve pharmacological interventions, such as carefully prescribed medications, but also non-medicinal approaches like physical therapy, massage or alternative therapies like acupuncture.

Seek Professional Guidance & Patient Advocacy

Last, but not least, my favorite word: advocacy. And that’s not only because I’m a Florida Board-certified Patient Advocate. Anyone who’s spent time around the public health system knows you must ADVOCATE for yours or your loved one’s needs to get anything done sometimes. 

Seek guidance from healthcare professionals with expertise in dementia care pain management to navigate the complexities. Seek patient advocacy from someone who navigates health systems every day for the best results. Seek personal advice from someone who’s experienced the dementia journey with a loved one first-hand. (Helpful hint: With my services, you get the best of all worlds!) 

Pain Management in Dementia Care: A Compassionate, Attuned Approach

End-stage dementia care brings a host of challenges. Loved ones’ memories and functional capacities have long since withered away, and care partners are often left mourning before their death. On top of it all, the death transition for persons living with dementia is very rarely peaceful. 

There will be pain. There will be discomfort. As a care partner, you will often feel helpless. By embracing non-verbal communication and employing gentle strategies, we can create a blanket of comfort for our loved ones.

Wishing you strength and compassion on your caregiving journey. I’m always here to help.

Let’s explore a facet of dementia care that often leaves caregivers with conflicting emotions: the co-existence of presence and absence. Dementia is a reality where two diametrically opposed things can be true – he’s there, but he’s not there. 

I’ve heard that so many times as a Board-certified Patient Advocate. “Mom’s there” or “Dad’s there,” but “they’re not.” At least not how they used to be. What’s worse, as our loved ones transition to later stages of dementia, they’re more likely to meander in and out of a lucid state. So moments when they seem “there” may be fleeting or cause a false sense of hope.

I feel it in my personal life, as well. Brian, my life partner/care partner, has entered the final stage of his Alzheimer’s and vascular dementia journey. Some moments, he’s alert, aware and even charming, just as he was back when he would speak confidently in front of large crowds. Other moments, he sits in silence, confused, unaware of pretty much everything around him, and can sometimes be aggressive.

It’s a profoundly sad reality – but reality nonetheless. It’s the paradox that loved ones and care partners of persons living with dementia experience daily. Many see their loved one there physically, but their intellectual, emotional and spiritual energies erode piece by piece with time. 

Let’s delve into these dual realities of dementia care, work to understand these powerful emotions, and discuss some caregiver coping strategies.

Dementia Care: Understanding the Ebb & Flow of Awareness & Cognition

Your loved one is physically present, yet there are moments when it’s obvious they’re slipping away. This paradoxical dance between lucidity and confusion can be emotionally challenging for dementia care.

Here are some reasons for meandering awareness and cognition with Alzheimer’s and other types of dementia.

1. Neurological Changes

Dementia, in its various forms, brings about significant neurological changes. It’s the slow and steady death of the brain. As neurons misfire and synapses disconnect, these changes create a shifting cognitive landscape where moments of clarity coexist with periods of confusion. 

Understanding this manifestation of the disease is crucial. Strong brain activity can be followed, in short order, by weak brain activity. And vice versa.

2. Environmental Triggers

Environmental factors can trigger fluctuations in cognitive abilities. Changes in dementia care surroundings, disruptions in routine or sensory overload may contribute to moments of disorientation. 

Identifying and mitigating these triggers can create a more stable environment. Sometimes a shift in lighting or moving to a different room can restore alertness and calmer brain activity.

3. Stress & Fatigue

Both care partner team members and dementia care recipients can experience heightened stress and fatigue. These factors may contribute to variations in cognitive function. 

Implementing stress-reduction techniques and ensuring adequate rest for everyone involved can make a significant difference. It may be difficult to keep a sleep routine for a loved one with dementia, especially if they’re suffering with sleep issues like sundowning, night terrors and hallucinations. But there are ways to nurture a more tranquil, sleep-inducing environment.

Coping Strategies for Caregivers of Dementia Care Recipients

On the care partner side, I always advocate for services like respite care, counseling and spiritual guidance to take a break and unpack powerful emotions. As a care partner of someone in dementia care, your experiences and feelings ARE NOT insignificant. 

Your loved one is “there,” but simultaneously “not there.” Traumatic? That’s an understatement. So here are a few ways to cope:

1. Embrace Each Moment

Acknowledge and appreciate the moments of clarity. They’ll happen less frequently and then not at all. If your loved one is present in the moment, just enjoy it. It’s a gift of more time with your loved one. 

Enjoy the foggy moments, too. Understand the shifts in cognitive function are not within your control. There’s no cure – and not that I would dissuade you – but you’re not likely to be the one to find it.

2. Flexible Communication

Adjust your communication style based on their cognitive state. Use simple, clear language during moments of confusion.

It should come as no surprise that your loved one will slowly lose the capacity to communicate effectively. Recognizing this loss as a steady regression, you’ll be able to orient your communication to their current state. Eventually, you’ll need to learn to communicate non-verbally as they’ll likely rely on gestures, eye movement and indistinguishable vocalizations. 

3. Create a Calming Environment

Minimize environmental triggers that may contribute to confusion. If possible, establish a familiar and soothing routine. There’s some debate as to whether a routine or letting the day take its course is better for dementia care. That may be a matter of preference.

Whether there’s a routine or not, a relaxing environment free from overwhelming factors would benefit everyone involved.

4. Build a Support System

Connect with other caregivers who understand the challenges of dementia care. There’s something therapeutic about just talking. Unpack your mental baggage, and choose fellow care partners who embrace being supportive.

Sounds a lot like building the perfect team, right? Well, that’s exactly what it is – and it’s essential in life-care planning for everyone aging in good or poor health. Seek professional support when needed, such as through support groups or counseling.

5. Practice Self-Care

Prioritize your well-being to navigate the emotional challenges. Take breaks when needed, and don’t hesitate to ask for help.

Dementia care requires resilience and a compassionate approach. Care partners can more easily deal with these dual realities with some planning and self-care.

6. Document Patterns

It’s amazing how many things in life that could be made better by a little documentation. Yet it’s even more amazing how many people rely on memory alone to keep their thoughts and tasks straight.

Keep a journal to identify patterns in your loved one’s cognitive fluctuations. Use this information to anticipate and manage challenging moments. Additionally, doctors and other care professionals can rely on the certainty of documentation. No medical professional wants to advise a care decision based on vagaries and estimates. 

Embracing the Dementia Care Journey – Its Ups & Downs

As care partners, it’s important to acknowledge that the paradox of presence and absence is an inherent part of the dementia care journey. Your loved one is “there,” but “not there” at the same time. They may emerge from the fog for brief stints, but those will certainly grow fewer and farther between. 

Approaching the end, persons living with dementia may even experience “terminal lucidity,” which for some reason restores cognitive function in the hours or days before death. Happy as those moments may be, the only miracle is their potential for temporary reconnection. Dementia is still 100% terminal.

Millions of dementia caregivers live this reality, so you’re far from alone. It’s a journey that demands flexibility, empathy and a deep well of understanding. That understanding must include being truly prepared for its ups and downs. 

If you need help, contact a Board-certified Patient Advocate like myself to tackle the life-care planning process and guide you through complex emotions.