Caring for someone with Alzheimer’s disease can be stressful and overwhelming. Knowing what to expect can help you make care decisions, provide a safe environment, and improve the well-being of your loved one.
The FAST (Functional Assessment Screening Tool) is one way to help you evaluate what stage your loved one is in. Stages can help because Alzheimer’s is a progressive disease. Familiarizing yourself with symptoms through each stage will prepare you psychologically to pivot as you prepare to cope with changing needs. Let’s review each stage of Alzheimer’s, possible care concerns, and ways to cope.
Stage 1: No Cognitive Decline
No cognitive decline means that there is no diagnosis of dementia and no complaints or difficulty with day-to-day functioning and memory. However, the risk of dementia is still present for seniors. We know that lifestyle choices can affect physical and mental health, so it is important to develop and maintain healthy habits. A balanced diet, regular exercise, socialization, and mental stimulation may have a preventative effect. Furthermore, this is the time to check with your loved one to ensure that advance directives, including a living will, are in order.
Stage 2: Very Mild Cognitive Decline
Stage two may not be apparent or noticeable to others and consists of some difficulty finding words, misplacing objects, and minor challenges at work. At this stage, someone may be doing well and able to function at a high level.
It is normal for everyone to forget names or where they put their car keys occasionally, and those symptoms do not necessarily indicate the beginning of dementia or Alzheimer’s disease. If you are anxious about forgetting, make lists and use reminders. Remember that stress and chronic medical conditions can affect cognition.
Stage 3: Mild Cognitive Decline
The average duration of mild cognitive decline is between two and four years. Mild cognitive decline indicates the initial development of Alzheimer’s disease, where cognitive problems become more evident. This stage is characterized by increasing forgetfulness, some difficulty concentrating, problems organizing that might affect work performance, getting lost, and word-finding issues.
At this stage, friends and family may begin to notice changes. It is essential to have a complete neurological evaluation to rule out any other causes. If a doctor makes a diagnosis of dementia, then you can discuss coping strategies for managing current symptoms and future support systems as dementia progresses.
Stage 4: Moderate Cognitive Decline
Moderate cognitive decline can last about two years, but every person will have an individual path influenced by lifestyle, other health problems, and stress. At the moderate cognitive decline stage, activities of daily life become more challenging to manage. Symptoms include difficulty handling finances, forgetting recent events (although there could be good recall for past events), problems completing tasks, withdrawal from friends and family, and some denial about symptoms.
This is the time to consider taking over finances, encouraging socialization as tolerated, helping to complete tasks, or hiring a caregiver to assist with cooking and organizing. Introducing an in-home caregiver is recommended at this stage since caregiver duties are likely to increase.
Stage 5: Moderately Severe Cognitive Decline
At stage 5, your loved one has increased difficulty with Activities of Daily Living (ADLs) such as dressing, bathing, cooking, and hygiene. Disorientation to time, date, and even location is common. At this stage, there are increasing memory deficits due to forgetting basic things such as their address and phone number. Learning new tasks is frustrating, and there could be emotional changes such as hallucinations, delusions, and paranoia.
More care, including professional home care, is needed at this stage to keep someone safe. You may require more support as a caregiver, such as group or individual therapy. Stress management and self-care are critical to keep you healthy.
Stage 6: Severe Symptoms Needing ADL Support
Stage 6 requires a high level of assistance and support with activities of daily living. Here is a breakdown of some tasks where support and strategies can help.
Stage 6a - Help to get clothes on and off.
With reminders, it is possible to help someone be as independent as possible in getting dressed and undressed, for example, setting clothes out in order of dressing and buying clothes that match to avoid mismatched outfits.
Stage 6b - Help with bathing.
Many people with Alzheimer’s do not like to shower and are resistant to bathing. Ensure that the bathroom is warm and inviting. Use a handheld shower to avoid discomfort and fear of overhead streaming water. In the shower, use a shower chair for stability. You may need to convert a bath/shower to a walk-in for ease and safety.
Stage 6c - Help with the different steps of going to the bathroom.
Someone at this stage should not go to the bathroom unaccompanied, if possible, due to fall risk. Make sure that the path to the bathroom is well-lit. Use an Emergency Response System (ERS) in case of a fall. Consider a toilet riser and grab bars on either side of the toilet for stability.
Stage 6d - Forgetting to make it to the bathroom in time.
Incontinence can have several causes, including a urinary tract infection, but often, incontinence occurs because messages between the brain and the bladder or bowels don’t work properly. Consider adult diapers for accidents and a bedside commode to eliminate walking to the bathroom.
Stage 6e - Forget to use the bathroom altogether.
At this stage, the use of incontinence products may be necessary. For example, adult diapers and bed pads can help with hygiene and reduce the need to get up at night. Also, scheduling trips to the bathroom can avoid accidents since someone will not tell you they have urgency.
Stage 7: Late-Stage Dementia
Late-stage dementia involves severe memory and communication deficits. In many cases, someone cannot communicate and requires assistance with all activities of daily living. They may also be bed-bound at this point and require hospice care. It will require great patience and sensitivity to care for someone with late-stage dementia.
Stage 7a - Language is restricted to using a few words a day.
Your demeanor when communicating with someone with dementia is critical to decreasing agitation and helping the person feel calm and cared for. Use simple and clear language so as not to be confusing or overwhelming.
Stage 7b – One-word communication is expected at this stage.
At this stage, focus on body language and any signs of pain or discomfort. Asking about pain is unlikely to give you the information you need to alleviate anxiety.
Stage 7c – Difficulty walking and transferring.
Assist someone in walking safely by ensuring someone always accompanies your loved one if they try to walk. Using assistive devices such as a walker or wheelchair, if necessary, can help someone feel more independent. However, passive physical therapy exercises and an alternating air mattress can help prevent bed sores if they become bed-bound.
Stage 7d - Sitting up may not be possible without assistance.
An electric hospital bed is necessary at this point to allow for ease and safety while caretaking and positioning for eating and drinking.
Stage 7e – Very little emotion is expressed.
People often retreat at the end of life and will not exhibit emotion. Accept this as normal and ensure the person is comfortable with minimal stimuli.
Stage 7f - The person cannot lift their head
At this stage, being quietly present with your loved one provides comfort and compassion as they approach the end of life. Even though they cannot communicate, you and your family’s presence is essential as you accompany your loved one on their final journey.
Final Thoughts
There may be few experiences as overwhelming as caring for someone with Alzheimer’s disease. It means adjusting your expectations and staying as present as possible through what will be an unexpected range of emotions. A guiding principle that can help is to look at the journey as the opportunity to ease the discomfort of someone you care about by remaining committed to compassionate care.