Coping With Advanced Alzheimer's Disease

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Advanced Alzheimer's disease can bring many changes for your loved one that you may not have thought about. Caregiving for someone in this later stage can become even more challenging.

Alzheimer's disease is progressive, which means it will get worse in stages over time. In the early stages, when it is just beginning, symptoms might be mild; however, in the late stages, people with dementia often depend completely on others for support with basic activities of daily living.

A young person cares for her older loved one with Alzheimer's disease

izusek / E+ / Getty Images

As it progresses and your loved one's symptoms and abilities change, you will need different information to help you support them. By learning how the disease progresses, it can help you plan for the future. This information is specifically about late-stage/advanced Alzheimer's and what to expect. 

Alzheimer's disease accounts for 60-80% of all dementia cases. It is a brain disorder that slowly destroys memory and cognitive skills. Over time, physical symptoms develop, and it affects the ability to carry out straightforward tasks. Alzheimer's is irreversible and the sixth leading cause of death in the United States.

Seek Help When You Are Ready

A diagnosis of Alzheimer's can be overwhelming for both the person diagnosed and their family. There is a lot of information to take in, but you can take it one step at a time. Only you can decide when is the right time for you to seek more information. Support is available when you decide to find out more.

Emotional

The emotional impact of advanced Alzheimer's can be hard-hitting for all involved. The growing requirement of support for activities of daily living, changes in family roles and dynamics, and the emotional distress of witnessing the progression of Alzheimer's can be upsetting. 

In the late stages, a person with Alzheimer's may be experiencing distressing symptoms such as severe impairment in memory, the inability to process information, disorientation to time and place, and difficulty producing recognizable speech. The patient might also have difficulties recognizing family members.

These all have a significant emotional impact as they have to rely fully on other people for support either in a long-term care facility or with full-time care at home. 

When offering emotional support to someone with late-stage Alzheimer's disease, consider their life history, feelings, likes, and dislikes. Three ways to connect and emotionally support someone with advanced Alzheimer's are reminiscing, engaging their senses, and considering spirituality.

Reminisce: You can reminisce with someone by sharing stories, photographs, and videos of past events. Remember the good, the happy, and the enjoyable times. Reminiscing is a way of giving a person validation. It shows them that you 'see' them. It validates their 'being' and their history. 

Engage their senses: Verbal communication can become challenging in the late-stages of Alzheimer's. However, there are other ways to positive ways communicate and connect through the senses:

  • Talk to them about everyday things. Just let them hear the sound of your voice and include them in your daily news.
  • Music is also great to put on to comfort someone. Pick the music they have always loved and enjoyed listening to.
  • Television or videos can be soothing to watch.
  • Getting outside stimulates all the senses. Sitting in the garden together is time well spent, especially if they can smell their favorite flowers nearby and hear the birds singing.
  • Use the sense of touch. Hold their hand or help them stroke their beloved pet.

Consider spirituality: If someone with Alzheimer's disease has been part of a faith/spiritual community, then try to include that in their life ongoing. Keeping the same rituals, support, and friends around them can be of huge comfort. It is familiar and part of their identity. 

If you are a family member, friend, or caregiver to someone with Alzheimer's, it is vital not to forget about your own emotional wellbeing. Joining a support group can allow you to find respite, express your worries, share experiences and advice, and receive emotional comfort. 

There are programs, helplines, and support services available to connect you with both peers and professionals. A good place to start is by speaking to your family doctor so they can signpost you in the direction of support. 

Don't forget that you will also need some time for yourself and to practice self-care. Looking after your physical and mental health will enable you to support your loved one better.

Physical

When reaching the advanced stages of Alzheimer's, people cannot communicate and rely on others for all their care. Physical symptoms such as being unable to walk, unable to sit without support, and difficulty swallowing develop in the latter stage of the disease. 

Due to the extensive care requirements faced, it may not be possible to provide the required level of care at home, even with additional support services. To ensure your loved one gets the care they need, it may be that a long-term care facility is the best option for your family.

This can be a tough decision and may differ from the plans you had decided in earlier stages. Regardless of where the care takes place, the decision is about ensuring the person with Alzheimer's receives the right level of care to meet all their needs. 

Whether care takes place at home or in a facility, the main objective should be enhancing the quality of life. If you decide that care at home, with assistance, is the best option, it's useful to consider the following physical problems:

Movement and Comfort 

When a person with Alzheimer's loses the ability to move independently, it is important to speak to your medical team about the support available to you. Your doctor can organize referrals to relevant health care professionals such as a physical therapist, nurse, home health aide, or occupational therapist. They can advise you on:

  • How to move a person safely without hurting you or them
  • How often you should help them change position
  • Special mattresses and pillows that help with positioning and reduce the risk of bedsores
  • Special chairs and wheelchairs for sitting
  • How to do range of motion exercises to prevent stiffness and bed sores

Non-Verbal Signs

During all caregiving activities, it is essential to pay attention to nonverbal signs. Signs of pain or discomfort might manifest in hand gestures, spoken sounds like groaning or shouting, or facial expressions like wincing. 

Eating and Swallowing Problems

In the advanced stages of Alzheimer's disease, a person can lose interest in food and develop swallowing problems. A dietitian can help you understand their dietary needs, meal planning, and how to maintain nourishment.

When encouraging eating, the following tips might help. However, everyone is different, and different tips work for different people. You might have to try a few things to find what helps with mealtimes:

  • Ensure the mealtime environment is calm, quiet, and free of distractions.
  • Serve meals at the same time every day where possible,
  • Ensure the person eating is upright, comfortable, and has appropriate support,
  • Make foods that you know the person enjoys,
  • Check dentures are fitted properly,
  • Don't rush mealtimes; leave plenty of time for the person to eat,
  • You may find several smaller snack-sized meals are easier for the person to eat than three full-sized meals,
  • Encourage fluids (and thicken them if necessary),
  • Try not to overload the plate with too many options,
  • If swallowing is difficult, ask your dietitian or speech and language therapist for advice on the easiest and safest foods to provide.
  • Monitor the person's weight so that you can track if weight loss or malnourishment occurs.

Swallowing Difficulties Can Be Serious

Chewing and swallowing problems can lead to other serious concerns such as choking or breathing food/liquid into the lungs. When food/liquid reaches the lungs, it can cause pneumonia, which can lead to death in someone weak and battling Alzheimer's.

If you notice chewing and swallowing problems beginning to occur, seek help early from a medical professional. They can assess the person's swallow and advise you on the safest way to manage swallowing problems.

Personal Care, Dental, and Skin Concerns

When a person loses the inability to move around, paying attention to their personal care, dental, and skin needs is vital. If left unattended dental problems or pressure sores can lead to infection. Personal health tips include:

  • Change the person's position every two hours to help avoid pressure sores and improve circulation. 
  • Protect at-risk, bony areas with pads or pillows.
  • At this stage, skin can become fragile and easily damaged. Therefore, when washing the skin, be very gentle and dab/blot dry rather than rubbing roughly.
  • Check areas prone to pressure sores regularly, including the buttocks, heels, shoulders, elbows, hips, and back.
  • Ensure the feet are regularly cared for with gentle bathing, moisturizing, and nails filed/trimmed.
  • Pay attention to oral hygiene and check for mouth sores, decayed teeth, lumps, and food that has been pocketed in the mouth.
  • Ensure adequate hydration but limit liquids closer to bedtime.
  • Monitor bowel movements and set a toileting schedule.
  • Use incontinence pads and mattress covers if required.
  • Treat any cuts and scrapes immediately, however small, to prevent infection.

Remember, healthcare professionals are available to support and advise you. Whether it be foot care, support with swallowing, advice on seating, or help with movement, your doctor can refer you to a range of specialists to assist you with any physical care concerns you have. You are not alone.  

Social

Being the caregiver for someone with advanced Alzheimer's disease can be emotionally and physically tiring. You will need support for yourself, so it is worth considering the following advice:

  • Join an Alzheimer's support group for caregivers, friends, and family members.
  • Look for online communities such as the Verywell communities on social media.
  • Read up on Alzheimer's so that you feel prepared for what is ahead at every stage.
  • Try to keep up with social activities you enjoy to help prevent loneliness and isolation.
  • Monitor your own physical and mental health.
  • Use respite care options to take time for yourself.
  • Be aware that grieving can happen at every stage of Alzheimer's as you grieve the losses caused by the disease.
  • Try to find the humor and fun in situations.
  • Seek professional support if it all becomes too overwhelming.

Practical

Ideally, discussions about financial planning, care planning, end-of-life care, and legal planning should occur while the person with Alzheimer's still has the capacity to make decisions. These can be difficult conversations to approach, but knowing their wishes can help with decisions in the disease's advanced stages. 

If you feel uncomfortable having these conversations, then reach out to your care team for support. Sometimes, it is easier to broach a difficult topic if a third party or health professional is present and can lead the conversation.

Encouraging a person to plan for their future helps them know that you will meet their wishes in the late stages of Alzheimer's disease. Your local support groups can advise you on what issues need to be addressed and who can help you address them. 

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Article Sources
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  1. National Institute on Aging. Alzheimer's disease fact sheet. Updated May 2019

  2. Alzheimer's Association. What is Alzheimer's disease? 

  3. Alzheimer's Society. Progression. late-stage. Updated June 2016.

  4. National Institute on Aging. Coping with late-stage Alzheimer's disease. Updated May 2017.