The Signs of Approaching Death with Dementia
End-of-life care is a critical part of client-centered care. Learn the three signs of when your clients are approaching death to provide the best care possible at this difficult stage.
Dementia is a progressive disease that affects memory, thinking, and behavior. As the condition advances, individuals begin to reach the end stages of life, presenting caregivers and families with a deeply emotional and often challenging time. There are just two ways to die:, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it, one that has been studied for generations.
Typically, the process of a gradual death from disease takes two to four months, while gradual death from old age with no disease takes longer. Regardless of diagnosis, there are three signs that indicate the dying process has begun. Recognizing these signs in dementia patients can help loved ones and caregivers provide the best possible care, offer comfort, and prepare for the final stages:
- Decreased eating
- Increased sleeping
- Withdrawal
These three things are on a continuum, gradually beginning in months before death and persisting right up to the moment of death. This article outlines the most common signs of approaching death in individuals with dementia, providing caregivers and family members with the tools to recognize when their loved ones are nearing the end of their journey.
Signs of Death
Weeks before a gradual death there are signs that we look for beyond decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before end-of-life, a person looks frail and sick but does not necessarily look like they are dying. This changes in the weeks before death, when the person truly appears to be approaching the end of their journey. (See Gone From My Sight for a description of all the signs of approaching death).
Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Dementia patients can withdraw from this world’s activities for years, whether by not being interested, acting non-interactive, uncomprehending, or unfocused. Someone with dementia may begin sleeping more, or even sleep all the time, and not have entered the dying process. Some specific signs of approaching death with dementia include:
Increased Withdrawal and Disconnection
Individuals with advanced dementia often begin to withdraw from activities and people around them. This may include a lack of interest in once-enjoyed hobbies or not responding to family members or caregivers. Although this disconnection can happen years before death, when it becomes more pronounced—along with other physical symptoms—it may be a sign that the person is nearing the end of life.
Extreme Fatigue and Sleeping
It’s common for someone with dementia to start sleeping much more than they used to. This is due to the body conserving energy as it prepares for the end. In the final stages, they may sleep almost continuously, waking briefly only to eat or drink, or be difficult to rouse. This deep, prolonged sleep often indicates the body is beginning to shut down.
Reduced Mobility and Physical Activity
As dementia progresses, patients typically experience a decline in their ability to move independently. In the later stages, they may become bedridden or require assistance with basic movements. If a person can no longer move, sit up, or hold themselves upright, it can signal that the end of life is near.
Difficulty with Eating and Swallowing
Difficulties with eating and swallowing are common as dementia progresses. You may notice a reduced appetite, refusal to eat, or choking when swallowing. These changes are often a sign that the body’s ability to process food and fluids is declining. Providing small amounts of easy-to-swallow food or liquids may help, but eventually, the person may no longer need sustenance.
Changes in Breathing Patterns
As the body begins to shut down, breathing patterns may change significantly. You might observe periods of rapid breathing followed by long pauses, known as Cheyne-Stokes breathing. Labored or shallow breathing may also become more apparent. These changes can be unsettling, but they are natural as the body approaches the end of life.
Fluctuating Body Temperature and Skin Changes
In the final stages of life, a person’s body temperature may fluctuate. Their skin might feel cool to the touch, or they could develop a bluish or mottled appearance, especially on the hands, feet, and legs. These changes occur because blood circulation slows as the body begins to shut down.
Death and Appetite
Dementia patients’ food intake can decrease as the disease progresses, but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat, we can’t live. If the patient or their family members decide not to use a feeding tube, then the dying process starts. No matter the stage of their disease, always offer food. You don’t just one day stop feeding someone. Generally, at this point, the person is struggling against eating. While we are the ones that are concerned,. the person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead. Also, be aware of choking potential.
If a feeding tube is not used, depending on the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.
The comprehensive booklet, How Do I Know You? Dementia At End Of Life, is recommended for families with a loved one who is in the final stages of life with a dementia diagnosis. Whether you’re a caregiver or a family member, ensure that you are prepared and have the right training so that the process goes as smoothly and comfortably as possible.
Preparing for End of Life with Dementia Patients
Caring for a loved one in the final stages of dementia can be emotionally and physically overwhelming. However, with proper preparation, caregivers and family members can create a more peaceful and dignified end-of-life experience. Here are several steps to help navigate this difficult time and ensure that the needs of both the patient and their caregivers are met.
Have Open Conversations About Care Preferences
It’s essential to discuss care preferences with your loved one early on, while they are still able to communicate their wishes. If this hasn’t already happened, family members should collaborate to honor the individual’s preferences to the best of their knowledge. Questions around medical interventions, hospice care, and advanced directives should be addressed to avoid uncertainty when difficult decisions need to be made.
Consider Palliative or Hospice Care
In the final stages of dementia, palliative care or hospice services can offer tremendous support. These programs focus on pain management, emotional support, and quality of life rather than curative treatments. Hospice care teams often include doctors, nurses, social workers, and chaplains, all working to ensure the patient is comfortable while giving guidance for family members and caregivers.
Prioritize Comfort and Pain Management
As dementia patients approach the end of life, their comfort becomes the top priority. Work closely with healthcare professionals to manage any pain or discomfort they may be experiencing. This may involve medications, adjusting their physical environment, and providing emotional reassurance. Paying attention to non-verbal cues such as grimacing or restlessness can help you understand their needs when they are no longer able to communicate verbally.
Offer Emotional and Spiritual Support
The end of life is often accompanied by emotional and spiritual reflection. Many patients may feel anxiety or fear, even if they are unable to express it. Offering a calm, reassuring presence can be immensely comforting. Engage with them by reading familiar passages, playing music, or simply holding their hand. If desired, bringing in a spiritual leader or counselor may provide both the patient and family members with a sense of peace and closure.
Take Care of Yourself as a Caregiver
Caring for someone at the end of life is physically and emotionally taxing. Make sure to take time for self-care, reach out for help from other family members or friends, and lean on support networks such as grief counseling or caregiver support groups. Taking care of your own well-being allows you to continue providing compassionate care without burning out.
Create a Peaceful Environment
The environment around your loved on can significantly impact their final days. Consider creating a peaceful, calming space with soft lighting, familiar objects, or soothing music. Try to reduce noise and distractions that may agitate or confuse the patient. A calm environment can help both the patient and caregivers find a sense of peace during this difficult time.
Learn More About End-of-Life with Dementia
Caring for a loved one with dementia as they near the end of life is a challenging journey, but with preparation and support, it’s possible to ensure they experience comfort and dignity during their final days. Remember that you don’t have to navigate this process alone. Many resources are available to help both family members and home care agencies to ensure individuals with dementia have the most comfortable end-of-life experience possible. For more guidance, explore our additional resources on end-of-life care, dementia support, and training.
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