Regardless of the Dementia type, there are usually 3 stages of Cognitive Impairment that are easy to recognize: mild, moderate, and severe. Memory testing score (such as Mini Mental Status score out of 30), is not accurately correlated with function because it relies on understanding questions, and expressing the answers with speech, both of which a person with moderate to severe Dementia likely has. Regardless of number, the beat way to tell stage is to ask the person or multiple who live with them to know how they are doing at home. There are also questions and scales that come on a form that the family, friends, or doctor completes to assign them a number, then check this every 6 months to determine the speed of decline. Thsee stages are important to understand so the patient, family, and friends can know what to expect and plan for the future.
In mild stage Alzheimer’s disease, may repeat themselves, forget even with reminders, or have trouble expressing names or words. They may withdraw from social situations or get easily irritated or frustrated.
In moderate stage Alzheimer’s Disease, repeating themselves becomes more frequent, they may lose their job, get lost driving, or make mistakes on bills. They may be easily scammed. They have more trouble expressing themselves in words. They often are at risk for dehydration and syncope (passing out) due to forgetting to drink water, have balance issues, or urinary incontinence because they forget to go to the bathroom. In moderate stage a person usually has trouble remembering to take their medications as well. In moderate stage Alzheimer’s, they often develop worsening apraxia, which means trouble knowing how to conform their body to tools or the environment. This, they may eat less because they have forgotten how to eat with a fork, or sit with their food in front of them because they have forgotten it is time to eat or that they are hungry. In moderate stage, they may need a caregiver or nurse at home with them while they are awake to help them remember medications, use the bathroom, drink water, and eat.
A person with severe Alzheimer's Disease usually does not talk unless spoken directly to, has trouble getting up from a chair, and may sleep most of the day. In severe Alzheimer’s Disease, a person usually needs help using the bathroom because they have trouble getting out of the chair, trouble getting dressed because they have trouble getting out of the bed, and trouble eating to the point that they can only drink with a straw. In severe Alzheimer’s the sleep-wake cycle is disrupted in that they can only sleep for a few minutes at a time and are usually up all day and night. They usually need care 24 hours per day. Sometimes they are sleeping almost the entire day, and the family may consider Palliative (comfort care), discontinuing some medications, or Hospice (In the hospital or at home). Typical Alzheimer's Disease may last a total of 20 years from symptom onset to passing away, usually 5 years in the mild stage, 10 years in the moderate stage, and 5 years in the severe stage.
Other forms of dementia (symptoms as described here) start with different symptoms, but all have mild, moderate, and severe stages. In mild stages of Vascular Cognitive Impairment, Parkinson’s Disease, or Lewy Body Disease a person may have mild trouble focusing or slow mental processing but are still able to work. In moderate stage of these diseases, their symptoms begin to affect their lives and they can no longer work, drive, or pay the bills. In the moderate stages of Vascular Cognitive Impairment, Frontal Lobe type Alzheimer’s, or Frontotemporal Dementia, a person may become disproportionately angry, unable to control their emotions, depressed, or inappropriate with people. Family is usually very stressed in interacting with them because of all the negative and hurtful things they may say, and seek a caregiver while they are working or when they need a break from interacting with the person (called Respite). In the severe stages of all these diseases, a person becomes unable to get up from a chair, doesn’t eat on their own, and doesn’t use the bathroom on their own. In severe stage they will need a 24/7 caregiver. Sometimes they are sleeping almost the entire day, and the family may consider Palliative (comfort care), discontinuing some medications, or Hospice (In the hospital or at home). We don’t know as much about the speed of progression of these diseases, but they are usually faster than Alzheimer’s, especially if they have a Mixed Type of Cognitive Impairment.
These stages are important to know because it can help you plan for the future, such as a part-time caregiver or Assisted Living in Moderate stage, or a 24/7 caregiver or Memory Care facility in Severe stage. Please note, however that most patients have a risk of falling in Moderate and Severe stage and usually need to be directly supervised some (in Moderate) or all of the day (24/7 supervision in Severe). Usually Assisted Living and Memory Care facilities do not come with one-to-one direct supervision, though it is beneficial for a person sometimes to live in these facilities because they don’t have to cook their own food, clean their house, and there a lot of games, outings, and social activities. However, based on the lack of one-to-one supervision, I would still recommend a caregiver‘s supervision while living in a Memory Care facility and perhaps even an Assisted Living.
As of 2018 the rates for Assisted Living are $6000 per month. Memory Care is more expensive. The rates for a caregiver are $20 per hour, so if 24/7 supervision is needed this would total approximately $14,000 per month
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This is very expensive! Thus it is important to discuss placement and finances with your loved one and a Geriatric Care Manager when they are still in the mild stage and have insight into their disease, and can understand you and plan well. A Geriatric Care manager helps you plan for the future given your personal finances and the person’s wishes, as well as look for ways to qualify for financial aid. Medicare, private insurance, or long-term care insurance can help reduce these costs, and it is more effective to consult a Geriatric Care manager when doing so. A Living Will and Advance directives will be needed in the mild stage, and an Elder Law attorney can help you with this.
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