Show notes
I've taken care of thousands of older adults living with Alzheimer's disease and ultimately dying either with or from this devastating disease. I hope the information in this podcast will help you to be prepared as your loved one moves through each stage of the disease. There is some variation in what different people think are the Stages of Dementia. I am of the mindset (pun totally intended) to keep things simple – so I think of this disease in 4 stages: Early-, Middle-, Late- and End-Stage; or Mild, Moderate, Severe and ultimately the dying process. Late-stage Alzheimer's – or Severe At this stage, the person is going to have severe symptoms and rely on others for all care. They lose the ability to carry on a conversation, respond to their environment, and eventually lose the ability to control movement. Common symptoms or difficulties in this stage include: ✔️ Difficulty communicating with words; which leaves their behavior to tell us what they might need. ✔️ Requiring around-the-clock assistance ✔️ Lose the ability to walk, sit and eventually they will have a hard time swallowing. In fact, nearly 80% of people in late-stage dementia will develop some form of an eating problem. ✔️ And because of the swallowing problems, they are at a higher risk for aspiration or bladder infections In the late-stage of this disease, the person will likely have trouble initiating engagement with you or their loved ones, but they still benefit from interacting in ways like listening to music together, singing, or receiving assurance through gentle touch. This is the time for caregivers to explore community services and supports like palliative and/or hospice care. If/when the time comes and your loved one is having trouble swallowing, I recommend working with a Speech Therapist to determine the best type of diet. This may range from mechanical soft foods to pureed and some level of thickened liquids to minimize the risk of aspiration. You should also seek the support of a local palliative care provider to help guide you through the end-of-life that is inevitable with this disease. No one has ever survived Alzheimer's disease. That means it is terminal illness – and you will either die with Alzheimer's disease - or from it. It is a highly emotional time for loved ones, but when you die from Alzheimer's disease, your loved one will not starve to death – they will die from Alzheimer's disease. Think about how nature handles death. Many forms of life stop eating and drinking when death is near, and this is not a painful process. Feeding tubes are not recommended in Alzheimer's disease because it is a terminal disease. Evidence has shown that feeding tubes don't do the things that most families wish they would: They do not decrease a person's risk for aspiration or infection; they don't improve quality of life, in fact, they are often pulled out which results in a trip to the emergency room or being hospitalized. It's not natural to have a tube hanging out of your body and when your brain has failed, you don't understand what it's doing there and it's natural to try to pull it out. If you find yourself in the situation of having to make a decision about a feeding tube, I'd like for you to learn more about handfeeding. Handfeeding is recommended over tube feeding until death. Offering supportive handfeeding using three different handfeeding techniques allows you to connect with your loved one - and offer food and fluids in the safest way. You can learn more about the handfeeding techniques by checking out my video titled "How to Help a Person with Dementia to Eat". End-Stage Alzheimer's Disease – The Dying Process At a certain point, your loved one will enter the dying process. In this final phase of life, you will want to have a palliative care or hospice provider guiding the care of your loved one. Here are criteria that are generally used to mark End-stage Alzheimer's disease. At this point, your providers should be asked if they would be surprised if your loved one passed away in the next six months. A life expectancy of six months or less, along with these other key symptoms typically mean the person has transitioned to dying. ✔️ They are bedridden, meaning they are no longer able to walk or sit upright ✔️ Total loss of control of both their bowels and bladder ✔️ Difficulty swallowing or choking on food or fluid ✔️ Weight loss or dehydration due to the challenges of swallowing when eating/ drinking ✔️ Not able to speak more than six words per day ✔️ Another chronic condition such as congestive heart failure, cancer or COPD. ✔️ An increase in trips to the emergency room or hospitalizations ✔️ A diagnosis of pneumonia or sepsis Alzheimer's disease is one that makes us all take one day at the time and live in the present. It can be a very long process, so I hope this information and recommendations for finding support have been helpful.