There are several stages of dementia caregivers and families should be aware of in order to plan ahead for the future, and understand what is happening to their loved one. The advanced stage of dementia can be the most challenging for a lot of people, so being aware of what this entails can help you to be prepared for what is to come. Here, we are taking a look at what advanced dementia is, how it differs from earlier stages of the condition, the common symptoms to expect, and the typical progression found at this stage. We will also share tips for effectively communicating during this stage, how to make the home safer for someone with advanced dementia, common behavioural changes, and how specialist dementia home care could be helpful. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global domiciliary care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about dementia care, we can help.
Advanced dementia is sometimes referred to as late stage dementia or severe dementia, and this is characterised by severe cognitive and physical decline that greatly impacts a person’s abilities. At this stage in the condition, a person with advanced dementia will likely experience profound memory loss, have an inability to recognise their loved ones, and have significant language impairment, making it difficult for them to communicate how they feel and what they need. The mild and moderate stages of dementia may also cause a number of symptoms, but the advanced stage usually requires more medical intervention and care. Physically, a person with advanced dementia will lose the ability to perform daily activities such as getting dressed, eating, and bathing by themselves, which means they will require full-time care. Behavioural symptoms, such as agitation or aggression, may intensify during this stage, too. Advanced dementia usually significantly impacts quality of life, making comfort care, pain management, and support from healthcare professionals and caregivers crucial for the person’s wellbeing.There are 3 main stages of dementia – mild, moderate and advanced – followed by the end-of-life care stage which can last for several months, weeks or days, depending on the person’s other health needs. At this point the person will usually require palliative care to manage pain, but this stage is usually the shortest, lasting around 1-2 years. You can learn more about the different types of dementia and how they progress in our guides to the different types of dementia, and managing the stages of dementia.
Some of the most common signs and symptoms of dementia include memory loss, communication issues, impaired decision making, mood and personality changes, a lack of interest in things they once enjoyed, confusion, struggling with daily tasks, and physical decline. All of these can start as mild symptoms in the early and middle stages of dementia, and can progress in the advanced stages to the point where they significantly impair a person’s abilities. The advanced stages of dementia can cause many different symptoms that look different for everyone depending on the type of dementia they have and any additional health conditions they suffer from. Over time, the damage in their brain is likely to cause major difficulties for the person, and alter their perception of what is going on around them. Eventually, this will lead to the requirement of constant care. Alongside some of the cognitive symptoms of advanced dementia, physical changes can also be much more pronounced and therefore the person may need more support. For example, they may walk or move more slowly than they did, spend more time in a chair or in bed, have an increased risk of falls, struggle to eat on their own, have difficulty swallowing (and lose weight as a result), or become incontinent.
There is no blueprint for exactly how a dementia diagnosis will progress, when a person will reach the advanced dementia stage, and how long this will last. Even medical professionals may struggle to identify exactly where a patient with dementia is in the progression of their condition, but they can look at the symptoms and their progression so far to roughly predict what could be coming next, so caregivers can plan ahead. The advanced stages of dementia are usually the shortest, but they do still last on average around one to two years, depending on factors like how far the dementia had progressed when they were diagnosed, any other health conditions they have and their severity, the person’s age, how old they were when they were diagnosed, and more. The person will typically start to experience more and more symptoms like the ones mentioned, until they can no longer function alone. At some point in the advanced stages of dementia, a person will start to require end-of-life care, which means the end of their life is approaching and they will need the assistance of medical professionals and caregivers to help them manage pain and find comfort in the final months, weeks or days of their life. You can read more about this in our guide to end of life vs palliative care.
Caring for someone in the advanced stages of dementia can be challenging whether you are a professional caregiver or you are looking after a loved one. Here are some things to think about when caring for someone with advanced dementia:
If you are caring for a loved one with dementia and would like to keep them living in their own home, you may also wish to read our guide on caring for someone with dementia at home.
Whether or not someone with advanced dementia is able to walk independently around their house or not, certain parts of the home can and should be made safer to accommodate them, or made more efficient for them. Making the home safer for someone with advanced dementia could involve some modifications, such as removing any tripping hazards like loose rugs or clutter, and ensuring clear pathways around the home. You may also wish to install grab bars or use non-slip mats in higher risk areas, such as bathrooms, to prevent falls. Someone with advanced dementia may also lack the ability to make good decisions that take their safety into account, so it is important to securely lock away hazardous substances or sharp objects the person could use to hurt themselves and others. Even in the advanced stages of dementia, being at home surrounded by loved ones and treasured items in a familiar environment can make a big difference to the person’s wellbeing and mental health, and many people prefer this option to moving to a care home, nursing home or to a hospital for treatment. You may find some useful tips for making the home safer in our guide to home adaptations for disabled older people.
Behavioural changes in a person with advanced dementia can sometimes be the most difficult changes to deal with. It is emotionally challenging when the person is no longer acting like themselves, and may be saying and doing things that seem out of character. Some of the most common behavioural changes you might notice include:
By better understanding these behavioural changes, caregivers can provide the appropriate support and interventions to enhance their loved one’s quality of life and safety. It can help to take steps to create a calming atmosphere in their home, take part in soothing activities such as listening to gentle music, and providing regular emotional support so they can talk about why they are feeling the above emotions, if they wish to. One thing to note when caring for someone with advanced dementia is that studies have found some people nearing the end-of-life care stage experience temporary moments of lucidity and understanding about their situation before their symptoms progress or before they pass away.
It can be difficult to know when the right time is to bring in professional caregivers to help with a loved one who has advanced dementia. According to a 2020 review, most people with advanced dementia will require additional care to help manage their symptoms, so if you are currently caring for a loved one in the advanced stages of dementia, it is important to research the professional support options available to you so you are ready to implement this as soon as their symptoms become too advanced for you to manage alone. Research has discovered dementia patients may experience higher activity levels, quality of life, and feel more socially connected in their own home than in a care home, so if you feel this may be the case for your loved one, you could arrange home care to visit their home instead of moving them somewhere new. You can read more in our guide to the benefits of home care vs a care home.Specialist dementia carers are available in the UK, and this can be organised either through your local council by arranging a Care Needs Assessment, or by hiring a private carer or care agency for either occasional respite care or for part-time/full-time home care. It is also important to understand the other support options and services that may be available to you. Dementiasupport groups are available for caregivers looking after those at all stages of dementia, and you can usually ask your GP about these or research what is going on in your local area. These can be safe, supportive spaces where you can learn more about the care process for someone with advanced dementia. Also, here in the UK there are several charities dedicated to helping those with dementia and their families. You can take a look at the services offered by organisations such as Dementia UK, Alzheimer’s Society and Age UK, who all provide helpful resources.Respite care is crucial for those spending a lot of their time caring for someone with dementia, so whether you need to cover a holiday period, time off for illness, or you just need some help while you recharge your batteries, respite care is an essential resource for caregivers. You can learn more in our guide to what respite care is and how it works.If you would prefer more regular home care services, this can also be arranged through your local council, who will assess what your loved one needs and what they are entitled to for free by doing a Carer’s Assessment. Alternatively, you can reach out to a private home care agency like your local Home Instead office to get more flexible, bespoke support. Our Care Professionals are trained to deliver the specialist dementia care you need, and we can design a bespoke package prioritising your loved one’s health and happiness so you can focus on quality time with them rather than spending all of your time caring. It is also important to tell your GP if you are a caregiver for a family member with dementia, especially if they are in the advanced stages of dementia. You will almost certainly require help from medical professionals during this time to ensure your loved one’s pain and symptoms are managed, so liaising with their GP is important. Your doctor can also point you in the direction of other resources to help, and benefits you could receive to help the person you are caring for, such as Carer’s Allowance.Don’t forget to prioritise your self-care during this time in order to avoid carer’s burnout and maintain your own health and wellbeing along the way. By protecting your mental and physical health, you can continue to maintain a high standard of care for your loved one. Consider regular mindfulness practices, taking regular breaks and holidays, and bringing in support from other family members and loved ones to delegate care-related tasks and ease your physical and mental workload. At Home Instead, our dementia care has been developed using a unique programme for Care Professionals accredited by City & Guilds that is specialised for the home care environment, and created by dementia specialists and key medical practitioners from around the world. With our dementia care, you can rest assured your loved one will receive the best care in the comfort of their own home – feel free to reach out to the friendly Home Instead team any time. We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.
Tim Howell , Learning and Development Partner
With a professional background that spans healthcare, aviation, and specialized training, I bring a wealth of experience to the field of dementia care. As a former Registered Nurse with expertise in Emergency and Children’s Medical care, I transitioned to a 20-year career in aviation, serving as a Cabin Director and Base Cabin Crew Manager. In these roles, I led recruitment, training, retention, and leadership initiatives for cabin crew teams across the UK.<br /> <br /> For the past 16 years, I have been dedicated to the care sector, progressing from Care Professional to Care Manager, and later assuming roles such as Specialist Training Manager. Currently, as a Learning and Development Partner at Home Instead’s National Office, I develop and review training programs, collaborate with external organizations like the Alzheimer’s Society, and manage various impactful projects.<br /> <br /> My passion for dementia care has guided much of my work, from engaging with advanced dementia support initiatives, such as those offered by the End of Life Partnership, to staying informed through events like the annual Dementia Summit. These efforts reflect my deep commitment to enhancing the care and quality of life for individuals living with dementia