End-of-life care is a challenging undertaking for a patient’s loved ones, and dementia amplifies the emotional strains and adds difficulties in providing care. Dementia is an umbrella term used to indicate a suite of symptoms linked to loss of memory and cognitive abilities leading to hindered functionality. Alzheimer’s disease is the most common form of dementia constituting 60 to 80% of cases. End-of-life dementia symptoms are not always predictable, however, there are certain documented indicators that provide insight into a patient’s progression.
At Hospice of South Louisiana, we assist dementia patients and their families in their final stages of life. We make sure each patient’s needs are met when they become unable to express themselves. If you or your loved one has been diagnosed with dementia, here is what you need to know about end-of-life dementia symptoms.
Understanding End-of-Life Dementia Symptoms
Dementia is a slow progressing disease, and it is challenging for family members to discern dementia’s stages when they’ve been watching the nonlinear advancement of their loved one’s dementia for years. Hospice providers offer perspective. Here are some common signs that a patient’s dementia symptoms are in their final stage.
- The patient is unable to move on their own. In some cases, this can include the inability to sit up and control their head, and being confined to bed.
- The patient becomes incomprehensible or loses their ability to speak. Their speech will be reduced to singular words and phrases, often without any apparent logic behind them, or the patient will become unable to speak entirely.
- The patient struggles to consume food. This includes a disinterest in sustenance and struggling to swallow.
- The patient’s inability to control their bowels and bladder.
These symptoms are most often signs of the final phase of life if patients also have recurring infections, bedsores, and generalized frailty.
Final Days and Hours
Given the nature of dementia, a patient can suffer from end-of-life symptoms for long periods of time before passing. Here are a few signs that your loved one is in their final days or hours of life.
- Loss of consciousness
- Inability to swallow
- Agitation and restlessness
- Irregular breathing
- Cold appendages
How Hospice Can Help with End-of-Life Dementia Symptoms
Receiving hospice care before your loved one has reached their final days can improve their comfort, safety, and relieve emotional burdens.
Treating Dementia Induced Complications
Because of their reduced fluid intake, struggles swallowing, and limited mobility, dementia patients run a high risk for urinary tract infections and respiratory complications chest infections. These require intervention.
It can be challenging for family members to discern whether their loved one’s behaviors such as shouting and agitation are an indication of pain or a result of the confusion induced by dementia. Hospice providers recognize when our patients’ behaviors are pleas for help, not just the side effects of dementia. Hospice of South Louisiana’s team of doctors and nurses guarantee that your loved one gets the treatment they require.
Feeding In the Final Stage of Life
In their final stage of life, it is common for dementia patients to require artificial nutrition and hydration methods. The two most common forms are:
- Nasogastric Tube: funnels nourishment through the patient’s nose and into their stomach
- PEG Tube: provides nourishment into the stomach by placing a flexible feeding tube through the patient’s abdomen.
Not all patients are candidates for artificial nutrition, and some are not able to tolerate much liquid at the end of life. There are other methods of optimizing and adapting traditional feeding methods that our staff can assist in educating you with. A few of these are using a thickener for liquids, pureeing or chopping food, and being sure the person is upright when eating.
Hospice of South Louisiana is equipped to assist with our patients’ artificial alternate nutrition and hydration needs. When our patients’ lose interest in consuming food, we make sure their lips remain moist and clean.
Depression and fatigue are common in dementia patients’ caretakers. You have a right to feel whatever you need to feel. It affects you because you care. It isn’t uncommon for family members to feel relief for both themselves and their loved one when they pass after watching them suffer from advanced dementia. You should not feel guilt or unease for experiencing these normal emotions.
Hospice of South Louisiana provides counseling from a social worker and spiritual guidance to aid caregivers and patients in processing their emotional journey. We encourage our patients and their families to reach out and start the conversation at any point they feel they need assistance grappling with the weight of their situation. Many family members of dementia patients require anticipatory grief counseling as well as assistance sorting through their emotions once their loved one has passed.
Click here for more information on the benefits of getting hospice assistance early.
Make End-of-Life Dementia Decisions Before Symptoms Progress
Because patients in late-stage dementia are unable to communicate clearly, it is important for patients and their families to form an end-of-life care plan. When a patient is first diagnosed, they are still able to legally complete advance directives and other documents. There are two types:
- Advanced decisions: the choice to refuse treatments are legally binding documents.
- Advanced statement of wishes: are not legally binding, however, they should be honored.
Caregivers are left in a very challenging position if their loved one did not clarify their care preferences before they entered the later stages of dementia.
You should understand what your loved one’s preferences and goals are for achieving a positive quality of life. In mild-to-moderate Alzheimer’s disease, medications can modulate certain behavioral symptoms. However, if a patient is in an advanced phase of Alzheimer’s disease, some medication may only provide minimal relief, and the medications’ side effects can outweigh its benefits.
It is best to discuss in advance what end-of-life goals your loved one has, analyzing medications’ risks and benefits accordingly. Even though it is a hard conversation to have, when you’re weighing a person’s comfort against their longevity, they deserve a voice. Hospice of South Louisiana’s physicians help facilitate these challenging conversations and craft a treatment plan that meets quality of life goals.
You Aren’t Helpless
Caring for someone with late-stage dementia is particularly challenging because their confusion prevents them from connecting emotionally to their familial caregivers. Many feel robbed of their final chance to connect with their loved one and express how they have impacted their life. While you may not be able to connect with your loved one the way you both deserve, they are not lost to you.
Even if they are unable to communicate how they feel, a patient in late-stage dementia is not immune to emotion. It may still bring them joy to hear you talking to them, even if they have a hard time comprehending you. They can identify tone of voice and are comforted. It is important to rely on your loved one’s nonverbal communication in order to understand their feelings and wishes during the final stages of dementia. It is best to tap into their sensory connections to communicate with them.
Ways to Accomplish This:
- Seek and hold eye contact
- Physical touch such as holding hands and providing comforting hugs
- Speak in soothing tones or play calming music
Because patients in late-stage dementia can only communicate in a non-verbal way, they are often most comforted and impacted by their loved ones’ non-verbal communication.
You Are Not Alone
Identifying the end-of-life dementia symptoms can provide clarity, and having a solid understanding of your loved one’s quality of life goals serves as a road map for providing their desired treatment when they become unable to articulate their wishes.
Even still, providing care to your loved one as they grapple with end-of-life dementia symptoms can feel extraordinarily isolating. But you are not alone. Hospice of South Louisiana comes alongside families and facilitates challenging conversations, aids in caregiving tasks, and renders emotional support.
If you need assistance providing care to a loved one with end-of-life dementia symptoms, reach out to Hospice of South Louisiana today. You don’t have to do this alone.