A guide to advanced dementia

What is advanced dementia?

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.

How does advanced dementia progress?

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.

What are the best ways to care for someone with advanced dementia?

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:

• Find creative ways to communicate – At this stage, a person with dementia may no longer have the ability to communicate how they feel, any pain they have, or what they need. Similarly, they may lack the understanding to pick up on what you are trying to tell them, so you may need to think of creative ways to speak to them. Use simple, clear language and maintain eye contact as much as possible. Give them plenty of time to consider what you have said and to answer, or to use non-verbal cues to get their points across. 
• Be patient and practice empathy – Interactions with someone who has advanced dementia can be tough, and can test patience. Remember to slow everything down, stay calm when frustrated, and be as patient as possible as you communicate with the person and try to get things done throughout the day.
• Offer emotional support – As well as practical and physical support, a person with advanced dementia will also benefit from reassurance, affection and companionship to combat negative feelings during this stage, such as loneliness and fear. Advanced dementia can be a frightening stage for those going through it, so emotional support will be incredibly important to improve their wellbeing. 
• Find practical ways to assist with daily activities – From bathing, to getting dressed, to eating meals, to moving them from one place in the home to another, caring for someone with advanced dementia can be physically demanding. Helping them to move around the home can be difficult, but you can learn more about safe ways to do this in our guide to moving and handing in home care.
• Focus on maintaining their dignity and respect – Performing certain personal care routines for a person with advanced dementia, particularly when they are at the end-of-life stage, can mean helping with intimate elements of care. In these situations, it is important to maintain the person’s dignity by showing them respect at all times and making sure that, even when they are unable to share how they feel, you take this into consideration by attempting to understand their non-verbal cues. 
• Remember to prioritise nutrition and hydration – Many people in the advanced stages of dementia struggle to eat due to swallowing difficulties, mouth pain, or for other reasons. They may be missing out on elements of their nutrition and hydration as a result, so focus on helping them get nutritious, easy-to-eat meals, and managing their appetite and thirst as much as possible. You can read more in our guides to handling loss of appetite in older adults and symptoms of dehydration in older people.
• Create a calm environment – During this difficult time, a person with advanced dementia will usually benefit from a calm environment free from excessive noise, stimulation, or with lots of people around. Studies have found the physical environment could impact and support elements of a person’s dementia symptoms and their behaviours, although more research is needed to identify exactly which environmental changes could have a positive impact. Still, maintaining a quiet, familiar, and safe space for them is thought to help reduce agitation and confusion, and could have benefits in other areas too. 
• Monitor their health – As a carer for someone with advanced dementia, it is important to keep an eye on their medical needs so you can report back to their GP or specialists. This includes things like keeping track of medications, watching for signs of pain or discomfort, scheduling regular medical check-ups with appropriate departments, and more.
• Seek professional help – For familial caregivers, sometimes it can feel like you need to manage everything on your own, but this is not the case. There are many resources and ways to get help during this challenging time, such as utilising home health aides, attending support groups, and bringing in respite care to manage caregiving responsibilities and prevent burnout. You can read more in our guide on how to choose and arrange home care services.

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.

How can the home be made safer for someone with advanced dementia?

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.

What are some common behavioural changes in advanced dementia?

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:

• Increased agitation
• Aggression
• Restlessness
• Repetitive actions (such as pacing)
• Heightened anxiety or paranoia
• Wandering (which can pose safety risks)
• Mood swings
• Irritability
• Emotional outbursts
• Hallucinations and delusions that cause strange behaviours 
• Confusion
• Fear
• Social withdrawal and apathy
• Sleep disturbances, such as insomnia or excessive daytime sleepiness

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.

When is the best time to seek professional support for someone with advanced dementia?

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.