A person with dementia will follow a typical pattern of decline, but the pace can vary between each individual. It’s important to know what to expect when your loved one has late-stage dementia so you can prepare emotionally and practically.
Care for Dementia: Key Definitions
The terms dementia and Alzheimer's are often used as if they are one in the same. They are related, but there are important differences between the two regarding diagnosis.
Dementia is a broad umbrella term for an individual’s changes in memory, thinking or reasoning. There are many possible causes of dementia, with Alzheimer’s being the most common. While dementia generally involves memory loss, this alone doesn’t mean that a person has dementia. Other symptoms of dementia include:
- Changes in thinking skills
- Changes in behavior and language
- Decline in memory
- Decreased focus and attention
- Poor judgement and reasoning skills
Alzheimer’s is a progressive brain disease, meaning it gets worse over time. Alzheimer’s disease first affects the part of the brain attached to learning, so symptoms can include changes in memory, thinking and reasoning skills. As it progresses, symptoms become more severe, including confusion, behavior changes and other challenges. Early signs and symptoms can include:
- Changes in mood, such as depression or other behavior and personality changes
- Confusion related to location or passage of time
- Difficulty concentrating, planning or problem-solving
- Having visual or space difficulties, not understanding distance in driving, getting lost or misplacing valuables
- Language problems, such as reduced vocabulary in speech or writing
- Memory impairment, such as difficulty remembering events
- Withdrawing from work events or social engagements
- Problems finishing daily tasks
The Importance of Early Diagnosis
Putting off an evaluation to determine what is causing memory loss can be more harmful than helpful. Dementia and its other forms are not inevitable consequences of aging and early detection can delay the onset of symptoms, including the following:
- Provides an explanation for changes in the brain
- Allows the patient to make decisions early on about their future
- Better access to medical care
- Better survival rates
- Gives the patient and loved one's time to adjust and come to terms with the diagnosis
Early detection can also help you understand the landscape as a caregiver and provide resources that you will need to care for your loved one with dementia. Research shows that dementia caregivers experience the highest rates of anxiety and depression. 1,2 The earlier your loved one receives a diagnosis, the more time you have to plan for changes and put support in place.
Effective Caregiving Strategies
As dementia progresses, people experience changes in thinking, memory and reasoning that affect daily life and activities. While it may be upsetting to your loved one who needs help in these areas of daily living, consider these tips to help ease confusion and distress:
- Keep a routine, such as bathing, dressing and eating at the same time each day
- When dressing or bathing, allow your loved one to do as much as possible
- Buy loose-fitting, comfortable, easy-to-use clothing
- Tell your loved one step by step what you’re doing in a gentle and respectful manner
- Serve meals in a familiar space and give them enough time to eat
What to Avoid Saying
Communication plays a key role in maintaining quality of life for people with dementia. How we speak to them can play a significant role in their daily experiences.
Avoid saying these six common phrases:
1. “Remember when?”
Asking a loved one to remember specific events can highlight memory difficulties and create unnecessary stress. Instead, start with “I remember when” to allow them to join into the conversation authentically without feeling pressure to remember a specific event.
2. “I’ve just told you that”
It can be frustrating hearing the same question or statement repeatedly, but showing frustration can cause distress. Each time feels like the first time to someone with dementia.
3. Avoid direct references to death of loved ones
When someone with dementia asks about a loved one who has already passed away, responding with “that person died years ago” can cause fresh grief and trauma.
4. “What did you do today”
Asking open-ended questions can create anxiety if your loved one doesn’t remember.
5. “Do you recognize me”
This question can create guilt and confusion if they don’t remember you.
6. Avoid complex, multi-step instructions
Long sentences including actions and ideas can become overwhelming. Be sure to present one instruction or idea at a time and give them time to process each bit of information.
Addressing Caregiver Stress and Burnout
Being a caregiver is an extremely rewarding but also a taxing responsibility. It can feel lonely, frustrating and you may feel emotions like anger which could be a sign you are taking on too much responsibility. Here are some tips as you remember to take care of yourself:
- Ask for help when needed. Reach out to family members and friends or reach out to local home health agencies for additional care needs.
- Eat a nutritious diet to stay healthy.
- Take breaks each day to make a cup of tea or call a friend.
- Try to get daily exercise and movement in as often as you can.
- Mindfulness practices may reduce blood pressure, anxiety, depression and insomnia.
- Consider help from mental health professionals to help you cope with stress and anxiety.
End-stage Dementia and Significance in Care
There are seven stages of dementia. As your loved one enters stages six and seven, they are considered in moderate-severe to end-stage dementia and require a higher degree of care. Signs and symptoms of later stage dementia can include:
- Limited speech using single words or phrases that may not make sense
- Having a limited understanding of what is being said to them
- Needing help with most everyday activities
- Eating less and having difficulty swallowing
- Bowel and bladder incontinence
- Limited mobility, problems sitting up and becoming bed bound
In these final stages, the two most common complications are eating problems (in as many as 86% of people) and infections. 3 It is important to have conversations with both family and your healthcare team ahead of these stages about supportive care needs as a person’s health declines. For example, the choice of artificial nutrition support (such as a feeding tube) is often not recommended. 4
During end-stage dementia, hospice care can support you in providing care that offers pain and symptom management promoting comfort. Your role as the caregiver still plays a prominent part in preserving quality of life and dignity for your loved one. Although they will eventually lose the ability to talk and express exactly what they need, hospice care is focused on the core part of the person that may still remain intact.
At this point in the disease, their world is primarily experienced through touch, sound, sight, taste and smell. Some ways you can connect through the five senses include:
- Playing their favorite music
- Reading portions of books that have meaning
- Look through old photos together
- Prepare their favorite food
- Use lotion in their favorite scent for skin care
- Brush their hair gently
- Sit outside together on a nice day
Supporting End-Stage Dementia with Hospice Care
In these final stages of dementia, hospice care can help guide you through the end-of-life journey. Deciding on when this care is right for your loved one can be an incredibly hard decision to make. Choosing hospice care focuses on quality of life and dignity by providing comfort, care and support services to your loved one with dementia and all who are involved in the caretaking.
At Amedisys, we offer specialized hospice care for dementia with our Dementia Specialty Program, which recognizes the unique needs of this group of patients and their families. By providing care that’s backed by research and that goes beyond medications, we are able to focus on managing the symptoms of dementia in its final stages. To learn more, you can talk with one of our hospice specialists for guidance. Remember, you never need to be alone on this journey—our hospice professionals are here each step of the way.
Deb Gallaher, MSN, MBA, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.
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