What To Expect In Stage Five Dementia: Symptoms, Challenges, And Support Strategies

Over 50 million people worldwide currently have dementia, and that number is expected to nearly triple by 2050. Dementia can present many challenges for those affected and for their loved ones and caregivers. As a disease that causes dementia progresses, individuals will typically experience worsening symptoms and increased difficulty with daily activities.

The stages of dementia can vary depending on the individual, the type of dementia they have, and other elements of their health. That said, medical professionals often divide them into phases numbered from one to seven in order of increasing symptom severity over time. Understanding what to expect in stage five dementia according to this scale can help family members and caregivers prepare themselves and plan how to best support their loved one with dementia.

Do you have a loved one with dementia?

Get emotional support in online therapy

Identifying dementia stages using the Global Deterioration Scale

Dementia symptoms are typically progressive and terminal, gradually worsening until the final stages. A framework like the GDS can help medical providers, caregivers, and loved ones of individuals with dementia understand what to expect for the patient’s condition so they can be equipped to manage symptoms and plan for the future.

Note, however, that the GDS is a broad tool, not a rigid guideline. The symptoms a person with dementia may experience, when they appear, and how long they last can vary. Some people may not experience certain symptoms listed on the GDS at all, or they may appear earlier or later than the guidelines suggest. For more specific information, speak to your loved one’s doctor.

Understanding stage five dementia symptoms

Stage five dementia is identified as “moderate dementia” per the GDS. In this phase of the illness, individuals will usually require some level of assistance in order to care for their daily needs. It may be around a year and a half before the person progresses to the next stage.

Symptoms and challenges of stage five dementia

In stage five dementia, a person may still be able to remember their own name but may have trouble recalling key life details, such as their address, phone number, the school they went to, and some family members’ names. They’re likely to experience some confusion related to the date and time and their physical location. While people in stage five usually don’t yet need assistance eating and using the bathroom, they may need help choosing the right clothing for weather or occasion and completing other daily tasks. 

Key challenges often faced by those past the first four stages of dementia

One significant challenge for many individuals in stage five dementia is the loss of independence. Daily activities that they once performed with ease now require support, which can be frustrating and disheartening for both the individual and their caregivers. 

Communication can also become more challenging in this stage. People with dementia might start to have trouble finding the right words, following conversations, or understanding complex instructions. These challenges can lead to feelings of isolation and frustration. Emotional and psychological shifts are also common during this stage of symptom progression. Examples may include heightened anxiety, signs of depression, or mood swings. 

Care and support strategies for loved ones of those with stage five dementia

Providing support to someone with stage five dementia usually requires a compassionate and flexible approach. Here are several strategies to consider that may be beneficial for both the individual with dementia and their caregivers and loved ones:

Arrange medical check-ups often

It’s usually helpful to get medical check-ups for the person with dementia regularly as their disease progresses. Their doctor can help monitor their overall health and suggest tips for managing emerging symptoms.

Establish a routine

Routines can provide a sense of stability and predictability, which can be comforting for individuals with dementia. Regular schedules for meals, activities, and rest may help reduce confusion and anxiety.

Simplify communication

Using clear, simple language and providing one instruction at a time can help individuals with stage five dementia better understand and follow directions. Maintaining eye contact and using non-verbal cues can also aid in communication.

Promote safety

Ensuring a safe living environment can reduce the risk of accidents and injuries. Removing potential hazards, such as loose rugs or cluttered spaces, can help prevent falls. Installing safety features like bathroom grab bars can also provide added support.

Engage in meaningful activities

Activities that the individual with dementia finds enjoyable and engaging and that match their interests and abilities can provide a sense of purpose and improve quality of life. Listening to music and gardening are two examples.

Provide emotional support

Acknowledging and validating your loved one's feelings may make them feel heard and understood. Offering reassurance, affection, and a listening ear may help alleviate stress and promote emotional well-being.

Each person's journey with dementia is unique. Remaining attentive to their changing symptoms and needs and offering personalized care and support can help promote their overall health and well-being.

Planning for the future

Since dementia symptoms often begin to more significantly interfere with a person’s daily life at this stage, the need to plan for the future can become more apparent. If you haven’t yet covered these topics with or on behalf of your loved one, here are some important factors that may be important to consider as soon as possible:

• Advanced care planning. Discussing preferences for medical care, including decisions about life-sustaining treatments, can give individuals with dementia a sense of control and help ensure their wishes are known and respected going forward. 
• Financial planning. Managing finances can become challenging as dementia progresses. It may be necessary to designate a trusted person to handle financial matters and to explore options like power of attorney.
• Long-term care options. Long-term care options, such as assisted living facilities or memory care units, may need to be considered as the individual's needs evolve. 
• Legal matters. Creating or updating legal documents such as wills and advanced directives can help ensure the individual's wishes are followed in the event that they are no longer able to make decisions for themselves.

Having these conversations early can significantly reduce stress and offer peace of mind to both the person with dementia and their relatives. As the disease progresses, plans may need to be reviewed and revised. Professional advice from attorneys and financial planners can help ensure informed decision-making.

Do you have a loved one with dementia?

Get emotional support in online therapy

Support for caregivers and loved ones of those with dementia

Many organizations offer training programs for dementia caregivers, which may help you learn practical skills and techniques for managing challenging behaviors and improving communication with your loved one. Technology can also assist in caregiving tasks, such as medication reminders, safety devices, and apps designed for dementia care.

Looking after your own well-being as a family member and/or caregiver of someone with dementia is important too. It’s common to experience a range of emotions as a loved one goes through the stages of dementia, such as grief, sadness, frustration, and even anger. Taking steps to boost your emotional resilience may help you navigate emotional highs and lows. Helpful techniques may include regular exercise, mindfulness, time with friends, getting plenty of sleep, joining a support group, and taking regular breaks from caregiving by leaning on family and friends or respite care services.

Online therapy as a way to receive support

If you’re looking for additional emotional support as you care for a loved one with an illness like dementia, you might consider meeting with a therapist. They can help you identify and process difficult emotions and identify self-care strategies you may want to add to your routine. For those who don’t have time to locate and then regularly travel to and from a therapist’s office for in-person appointments, online therapy might be more convenient. You can get matched and meet with a licensed provider from home. Research suggests that online therapy can be an effective form of support for family caregivers.