AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
My Dad was diagnosed with Dementia last october he is only 55yrs old, they are now saying it is mixed Dementia, we went through all the theorys of he must be stressed or depression but after the CT & MRI scans it was confirmed as dementia, my question is looking at the previous answer you gave listing the 7 stages i would say my dad is in stage 6 not fully stage 6 but does suffer from some of them, granted we dont know how long he he was suffering with it in the 1st instance, but in the last 6 mths has seen a massive decline as this seems to be rapid how long long is the life expantancy of someone with mixed dementia under 60yrs of age?
Thanks
Lynne
Answer Hi Lynne,
Your poor dad! As you can imagine, even in a person your dad's age with only one cause of dementia (vs. his double whammy of vascular dementia on top of Alzheimer's or other cause) it is very hard to predict survial time. A man who is 55 is very likely to be in overall good health other than his neurological problems. More elderly dementia patients tend to have a constellation of chronic health problems that can contribute to overall frailty.
Out of the entire population of dementia sufferers, most die from other causes than the dementia itself, in part because the dementia makes it very difficult to diagnose and treat many health problems. Many families will also elect palliative care alone in the later stages, because they feel it isn't worth putting their confused loved one through medical procedures - i.e. the person will be frightened and upset, not understand the purpose, possibly be in pain or uncomfortable from the tests or treatments, can't cooperate etc. As you can imagine, with many dementia elderly, their health is very precarious, and it often takes very little to push them over the edge -for example, a little minor cold or flu that you or I - or a man your father's age - might shake off, often starts a final spiral for someone who is 80 and has Alzheimer's.
I'm sure this kind of palliative thinking has occured to your family -after all, if your dad developed a cancer or serious heart problem, you might not think it kind to put him through surgeries or other invasive or painful procedures, even if it meant he might live a bit longer. You might also fear cognitive impacts of the procedures alone. His quality of life, his comfort and serenity - all these things are higher priority than just keeping the body going.
The description of the stages are just a general guideline. No one fits perfectly into each stage. Your dad's very rapid decline sounds like his vascular issues are very unstable. Alzheimer's itself doesn't tend to slide quite that fast, so he may be having little strokes or blockages constantly, leading to rapidly accumulating damage. I don't know what his cardiovascular situation is, but if he is having repeated small strokes, he may be at risk for a major stroke - which obviously could lead to death.
People even in end stage dementia can surprise you with how long they can survive. My mother in law was almost 80 when she passed away, and she spent two years in the final stage, basically unaware of her surroundings and unable to do anything for herself. She was physically very healthy, so there just weren't other issues to mercifully carry her off before the inevitable.
I know it's a horrible prospect, but the commonly used indicators that a person with dementia is in their final 6 months usually include:
Largely mute, bed-bound, unable to ambulate without assistance. History of recurrent aspiration pneumonias. Progressive weight loss. At or beyond stage seven of the Functional Assessment Staging scale (Dr. Reisberg's Stages). Urinary and fecal incontinence. Presence of co-morbid conditions in the past year: aspiration pneumonia, pyelonephritis or urinary tract infections, sepsis, decubitus ulcers (bed sores), fever after antibiotics, difficulty swallowing or eating food, unintended weight loss of >10% over last six months.
My mother in law didn't have the infection pattern, but she certainly had everything else. What finally happened despite coaxing and very frequent hand feeding, she took in less and less food and drink, and her weight started to slide. She did have trouble swallowing (it's from the brain damage)and was basically on thickened liquids and purees. She got weaker and weaker, slept more and more, and finally stopped eating and fell into a coma. Although the process was very difficult on the family, she didn't seem to be suffering at all. I think at that point, mercifully, they really are past any kind of mental distress, and are pretty much oblivious to their surroundings or even sensations from their bodies. Her passing was very gentle and peaceful - although again, because it was a gradual drifting away, it was extremly hard on my husband to watch and not be able to do anything but sit by her side and hold her hand.
I hope I haven't caused you distress. I know the uncertainty is very stressful and wearing, and you want to know what to expect. Most of these dementias are just not like other illnesses - they tend to be more of a marathon up hill through the rocks than a sprint, so hang in and pace yourself. All you can do is what you are doing - to support your family through this, and love your dad.
