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.
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 immediate care, you’ll need to start preparing for what lies ahead. Although Alzheimer’s is difficult to deal with when it’s first diagnosed, it is even more difficult to deal with as the disease progresses.
In this article, we 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.
Generally speaking, once a person is diagnosed, early stage Alzheimer’s will last for 1-2 years. During which the effects and symptoms are definitely noticeable, but they are not debilitating. Often times, a person with early stage 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. Sure, they may forget things from time to time, and their memory loss may manifest on occasion, 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 has begun to take its toll.
What to Expect with Mid-Stage Alzheimer’s Disease
Out of all stages of dementia in Alzheimer’s, the middle stage lasts the longest and can continue for many years. As the dementia from Alzheimer’s continues to progress, the patient will require a higher level of care to function in their day-to-day lives. During the middle stage of Alzheimer’s disease, it is vitally important for the individual suffering to receive adequate support through a caregiver.
Unfortunately, Alzheimer’s 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 to start jumbling their words, getting flustered or frustrated easily, having a difficult time getting dressed, 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 are difficult for everyone involved. Luckily, there are many resources available to both the patient and their caregivers/family members. As the disease progresses, 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 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 actively participate in their life as it changes.
Alzheimer’s changes one’s ability to function independently, particularly as the disease progresses. Due to this fact, you will have to take on a greater responsibility in assisting them with daily routines, and structure will grow increasingly more important.
However, you will gain experience as you care for a middle-stage Alzheimer’s patient, developing new strategies and ways of coping will help both you and the patient to work together better and more effectively. Of course, as the disease progresses, you will have to adjust and modify these routines to best meet the patients 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 Alzheimer’s brings. 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 Alzheimer’s. Caring for a person with dementia is incredibly rewarding in many ways, 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, it’s vitally important to care for yourself and ensure your needs are being met as well. You can only do a good job of caring for someone else if you are being taken care of yourself, too. It’s a good idea to look into what respite services are available in your area, and accept offers of help from friends and family. In addition, if you are a family member and finding it hard to pay for long-term care for your senior loved one with Alzheimer’s, do research to better understand all of your options. Would Medicare or Medicaid be able to offer help or financial assistance? Look into local services, resources and programs that could provide assistance.
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 common occurrence in middle-stage Alzheimer’s patients are behavioral changes. Often times, these changes in behavior can be one of the most concerning aspects of Alzheimer’s for family members and caregivers alike. In this stage of the disease, it’s common for patients to experience depression, irritability, anxiety and repetitive behaviors. As the Alzheimer’s progresses, 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 for how to handle them and ways you can help.
- Problems Performing Activities of Daily Living (ADLs) – Activities of daily living, such as grooming, dressing and eating, grow more difficult as dementia progresses in an Alzheimer’s patient. As the patient loses their independence and privacy, they can often act out, making this transition an incredibly difficult one. The best way to handle this is to do your best to be patient and sensitive in helping him or her through this aspect of the disease. When the time comes where your assistance is required, consider what tasks the patient can perform on their own and encourage them to do so as much as possible.
- Communication Decline – One of the most difficult 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. Patients often rely on non-verbal forms of communication, as they start 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 clearer, and in a gentle tone of voice. Take note that if you notice your loved one with Alzheimer’s experiencing a sudden change in communication, you need to contact their doctor, as this may indicate other medical issues.
- Stop Driving – The middle stage of Alzheimer’s will require a patient to stop driving entirely. As this takes away an aspect of their freedom, it’s a good idea to try and involve them in the decision to stop driving. You can do so by explaining your concerns, and by giving specific examples. Assure the Alzheimer’s patient that you will do everything you can to ensure rides are always available to them.
- 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 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 is living alone at this point, it may be time to hire a full-time in-home caregiver or to have them move in with a family member, or to a residential care setting that specializes in Alzheimer’s.
What to Expect with Late-Stage Alzheimer’s Disease
The late-stage of Alzheimer’s disease is the most unpredictable, in regards to both behaviors and the length of time in which a person will remain in this stage. In most cases, late-stage Alzheimer’s care will require around the clock intensive observation.
Alzheimer’s disease will progress rapidly during the late-stage. Care needs will deepen 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 with walking and eventually will be unable to walk
- Require full-time help with ADLs (Activities of Daily Living) 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 patients 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 us 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, 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 has been shown to be incredibly helpful for those with dementia
- Reading books that have meaning to the person
- Enjoying old photographs together
- Preparing their favorite meal
- Lighting up a candle of one of their favorite scents
- Brushing through their hair
- Sitting outside together on a nice day
Late-Stage Alzheimer’s Care Options
Due to the fact that the care needs are extensive during this stage, you may not be able to provide everything that’s needed 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 in order to get the care they need.
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 it’s best to make the decision after you’ve done research and settle with it, rather than second guessing the decision after you made it. There are so many great places that provide quality care to the elderly and those suffering from dementia. 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.
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 has the capacity to make decisions and express their wishes regarding life-sustaining treatment.
Perform Research on Alzheimer’s Care Options
As we 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, overtime it may be more beneficial for the patient to live in a care facility. Either way, doing your research on local care providers prior to more severe progress of Alzheimer’s is always the best method for staying on top of this tricky 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. However, taking care of a person who is in the mid-stage or late-stage of Alzheimer’s all by yourself can take a superhuman ability. If you attempt to care for them on your own, it’s likely you will eventually burn out and become extremely overwhelmed. Once this happens, both you and your loved one with Alzheimer’s will suffer the consequences.