The fact of the matter is: planning for mid-stage, and late-stage Alzheimer’s care is usually the furthest thing from your mind when a loved one is first diagnosed with Alzheimer’s disease and memory problems.
Before you can plan for the progression and future care of this Alzheimer’s, you must tend to your loved one and their immediate needs. That said, once you’ve had the chance to gather your scattered emotions and take the reins of their urgent care, you’ll need to start preparing for what lies ahead as the symptoms inevitably get worse. Although Alzheimer’s is challenging to deal with when it’s first diagnosed, it is even more challenging to deal with as the cognitive impairment progresses.
This article will cover how you can prepare for mid-stage and late-stage Alzheimer’s care so that you and your loved one can enjoy a better quality of life.
Alzheimer’s is a progressive disorder of the brain that causes the cells in the brain to waste away and eventually die. It is the most common form of dementia in older adults. According to the definition of dementia, it is the impairment of thinking, communication, and memory problems. It is more severe than short-term memory loss due to age. Alzheimer’s disease sets in when the brain develops abnormal clumps known as amyloid plaques and neurofibrillary tangles. Alzheimer’s and dementia have also been linked to complex changes and cognitive impairment of the brain and brain cells. One of the changes is the reduced loss of connections between the neurons, nerve cells in the brain, brain tissue, and lack of blood flow. Apart from Alzheimer’s disease, other common types of dementia include Parkinson’s disease, vascular dementia, Huntington’s disease, transient global amnesia, progressive dementia, frontotemporal dementia, Creutzfeldt-Jakob disease, multi-infarct dementia, Pick’s disease, and Lewy body dementia among others.
Generally speaking, once a person is diagnosed, early-stage Alzheimer’s or mild dementia will last for 1-2 years. During which, the early signs are noticeable, but they are not debilitating. Often, a person with early-onset Alzheimer’s will be able to live a pretty functional life, completing Activities of Daily Living (ADLs) on their own without too much of a struggle with forgetfulness. The person with early Alzheimer’s disease may have brief memory lapses, and their memory loss may manifest on occasion as mild cognitive impairment, but they will be quite functional overall. That said, people with dementia will still be able to take care of themselves, but that will decrease with time, as will their ability to remember things. As their memory starts to slip more frequently, you’ll know that mid-stage Alzheimer’s disease has begun to take its toll. At this point, memory care facilities, senior living community centers, or a memory care residence may be necessary to take better care of the dementia residents.
What to Expect with Mid-Stage Alzheimer’s Disease
Out of all stages of memory loss in Alzheimer’s, the middle stage of dementia lasts the longest and can continue for many years. As the dementia-like symptoms from Alzheimer’s continue to progress, the patient will require a higher level of memory care to function during daily living. During the middle stage of Alzheimer’s disease, it is essential for the dementia patient to receive individualized care through a caregiver, staff, or licensed nurses to provide support for their memory problems and aging.
Unfortunately, dementia and Alzheimer’s disease causes damage to the brain and cognitive decline that makes it increasingly difficult to perform routine tasks and express one’s thoughts clearly and accurately. It is common for a person going through mid-stage Alzheimer’s and cognitive problems to start jumbling their words, getting flustered or frustrated quickly, having a difficult time getting dressed, cleaning their living spaces, or acting out in unexpected ways. Don’t be surprised if they refuse to take a bath when doing so used to be one of their favorite activities for relaxing.
These changes and symptoms of dementia are stressful for everyone involved. Luckily, there are many resources available to both the patient and their caregivers and family members. As the stages of dementia progress, you will notice how some days are good, and others may seem especially challenging. That said, as your relationship changes with the person with dementia symptoms changes, you’ll be able to find new ways to connect and deepen the bond you share with them.
Your Role During Mid-Stage Alzheimer’s
Whether you are a family member or the caregiver of an Alzheimer’s patient, it will require patience and flexibility to be an active part of their life as it changes.
Alzheimer’s symptoms change one’s ability to function independently, and their problem-solving skills as the disease progresses. Due to this fact, you will have to take on greater responsibility in assisting them with daily activities, and structure will grow increasingly more important.
You will gain experience as you provide in-home care or care assisted living for a middle-stage Alzheimer’s patient. Developing new strategies and coping methods will help both you and the patient with dementia symptoms to work together better and more effectively. Of course, as the signs and symptoms of memory loss and dementia worsen, you will have to adjust and modify these senior care routines to best work at preventing memory loss and meeting the patient’s needs.
The Alzheimer’s Association offers educational workshops and plenty of helpful resources that can provide you with the caregiving skills needed to evolve with the care level changes that stages of Alzheimer’s disease brings, be it at home or in senior living communities. If you are an Alzheimer’s caregiver, sharing information and actively participating with other Alzheimer’s caregivers through support groups and online forums can help you cope with the adaptations required of those who care for someone with symptoms of Alzheimer’s disease. Caring for a person with signs of dementia is incredibly rewarding; however, discussing experiences with other caregivers will provide you with the support and relief you may desperately need in difficult times.
As a caregiver for mid-stage dementia or long-term memory loss, it’s vitally important to care for yourself and ensure that your needs are met. You can only do an excellent job of caring for someone else if you are taking care of yourself, too. It’s a good idea to look into what respite or continuum of care services are available in your area, and accept offers of help from friends and family. If you are a family member and finding it hard to pay for long-term care for your senior loved one with Alzheimer’s, you can research to understand all of your options better. Would Medicare or Medicaid be able to offer help or financial assistance for a long-term care facility? Look into local services, resources, and programs that could provide support for Alzheimer’s dementia people.
Mid-Stage Concerns to Consider
Below, you’ll find a list of some of the concerns you’ll want to keep in mind when planning for your loved one’s mid-stage Alzheimer’s care:
- Behavior Changes – A very regular occurrence in middle-stage Alzheimer’s patients are behavioral changes. Frequently, these changes in behavior can be one of the most concerning signs of Alzheimer’s for family members and caregivers alike. In this stage of the disease, it’s normal for patients to experience depression, stress, irritability, high blood pressure, anxiety, and repetitive behaviors, more so than during the typical aging process. As Alzheimer’s disease and cognitive function decline, these behavior changes could worsen, and sleep changes, physical and verbal attacks, and wandering can also occur. If you educate yourself on what behaviors are common during various stages of Alzheimer’s disease, you’ll be better prepared to handle them and know how you can help with age-related memory loss.
- Problems Performing Activities of Daily Living (ADLs) – Activities of daily living, such as grooming, dressing, physical activity, and eating, grow more complicated as dementia and memory loss progresses in an Alzheimer’s patient. As the patient loses their independence and privacy in their living areas, they can often act out, making this transition an incredibly difficult one. The best way to handle this is to be patient and sensitive in helping him or her through the memory loss and forgetfulness. When your assistance is required, consider what tasks the patient can perform on their own. Encourage them to do as much as possible for their own health and well-being.
- Communication Decline – One of the most challenging side-effects of Alzheimer’s disease is that it takes away one’s ability to express their thoughts and follow conversations, in addition to making it more difficult for them to understand others. Residents with dementia often rely on non-verbal forms of communication, as they begin struggling to find the right words, lose their train of thought, or start to repeat questions. You can do your part in making this part of the transition less painful by making simple communication changes, such as speaking slower and more precise and in a gentle tone of voice to those living with dementia. If you notice your loved one with signs of Alzheimer’s disease experiencing a sudden change in communication or social interaction, you need to contact their doctor, as this may indicate other medical issues that may require drugs or medications to help. It might even be worthwhile to see if there are any clinical trials in your area for Alzheimer’s and dementia care.
- Stop Driving – The middle stage of Alzheimer’s will require a patient to stop driving entirely due to their mental health and alertness to the world around them declining. As this takes away an aspect of their freedom, it’s a good idea to involve them in the decision to stop driving, since it causes a higher risk to them and others. You can do so by explaining your concerns, and by giving specific examples of memory impairment. Assure the Alzheimer’s patient that you will do everything you can to ensure that rides are always available to them for necessities and social activities.
Other Safety Concerns – As the early stages of mid-stage Alzheimer’s start to set in, it can become too dangerous for a person with the disease to be left alone. Wandering in dementia or Alzheimer’s patients is very common, particularly when they’re entering the middle-stage. Safety precautions need to be taken throughout a person’s living environment to prevent wandering from happening. If the patient with a dementia diagnosis is living alone at this point, it may be time to hire a full-time in-home caregiver, have them move in with a family member, or move to a residential care setting specializing in Alzheimer’s.
What to Expect with Late-Stage Alzheimer’s Disease
The late stage of Alzheimer’s disease is the most unpredictable in both behaviors, and the length of time a person will remain at this stage. In most cases, late-stage Alzheimer’s or late-stage dementia care will require around the clock intensive observation.
Alzheimer’s disease will progress rapidly during the late-stage of severe dementia. Specialized care needs will increase and change as the disease progresses. A person who is in the late-stage of Alzheimer’s will usually:
- Have a difficult time eating and swallowing
- Need help walking and eventually will be unable to walk
- Require full-time assistance with ADLs (Activities of Daily Living) such as bathing and hygiene and personal care
- Will become especially vulnerable to infections, particularly pneumonia
Your Role During Late-Stage Alzheimer’s
When it comes to late-stage Alzheimer’s, the most you can do as a family member or caregiver (or both) is to focus on preserving the patient’s quality of life and their dignity. Even though a person’s ability to walk and talk will diminish during the late-stages of this disease, scientific research shows that some core of the person’s self remains. That said, there are ways you can connect with a person during the late stages of Alzheimer’s.
In the late-stage of this disease and mental decline, the patient primarily experiences the world through their senses. You can convey your care for them through touch, taste, sound, sight, and smell. For example, you could try:
- Playing his or her favorite music – Music Therapy is shown to be incredibly helpful for those with dementia
- Reading books that have meaning to the person
- Enjoying old photographs together
- Preparing their favorite meals
- Lighting a candle of one of their favorite scents
- Brushing their hair
- Sitting outside together on a beautiful day
Late-Stage Alzheimer’s Care Options
Because the care needs are extensive during this stage, you may not be able to provide everything required for them at your home. At this point, it’s almost guaranteed that the late-stage Alzheimer’s patient will need to move into a full-time care facility to get the care they need for memory and aging problems.
Families who’ve gone through placing their loved one in an Alzheimer’s care facility have shared how difficult this part of the process can be. That said, every family we discussed the topic with said that it’s best to decide after you’ve researched to settle with it, rather than second-guessing the decision after you made it. Many beautiful places provide quality care to the elderly and those who have dementia, which lessens the risk factors of them wandering or falling because of the constant supervision provided there. You’ll be able to make the right choice on a facility by visiting it, doing your research, and reading reviews from others who’ve used the facilities services and their dementia treatment.
If the Alzheimer’s patient you’re caring for is at the end of life, hospice care is another option to consider. The underlying philosophy of hospice primarily focuses on quality and dignity through providing care, comfort, and support services for people with terminal illnesses and their family members. Medicare can provide financial support for hospice services and hospice benefits; a physician must diagnose the patient with Alzheimer’s disease as having less than six months to live, however, if you’d like to use this benefit.
In ideal circumstances, end-of-life care wishes should be discussed when the person with Alzheimer’s still can make decisions and express their wishes regarding life-sustaining treatment.
Perform Research on Alzheimer’s Care Options
As mentioned before, it can be hard for family members and caregivers to keep up with the progression of Alzheimer’s disease in a loved one. Many choose to hire in-home Alzheimer’s care providers to help share the workload involved in caring for someone with dementia. That said, over time, it may be more beneficial for the patient to live in a care facility to help with their cognitive functioning decline. Either way, doing your research on local care providers before the Alzheimer’s becomes more severe is always the best method for staying on top of this complex disease, and ensuring your loved one receives the best care possible.
Always remember this when it comes to both mid-stage and late-stage Alzheimer’s: you must be realistic. Naturally, when a loved one is diagnosed with Alzheimer’s, you want to do absolutely everything for them and their health. However, taking care of a person who is in the mid-stage or late-stage of Alzheimer’s all by yourself requires superhuman abilities! If you attempt to care for them on your own, you’ll likely burn out and become extremely overwhelmed. Once this happens, both you and your loved one with Alzheimer’s will suffer the consequences.