When a person is living with advanced stages of dementia, all areas of human ability are severely compromised. They have to rely on others for social engagement, occupation and activities of daily living. This section looks at what it's like to live with advanced dementia, communication and the impact on carers.
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Advanced dementia' refers to the later stages of dementia, where a person's loss of physical and cognitive functioning is widespread. There are many physical health problems associated with advanced dementia, and these can make day-to-day life difficult. For a person with advanced dementia, communicating and understanding others becomes extremely challenging. It is vital for care staff and family carers to identify and support whatever skills an individual with advanced dementia still has.
Living with advanced dementia
It is important to try to imagine what it might be like to live with advanced dementia. A person living with advanced dementia, may feel frightened, lonely or in pain but not be able to express these emotional or physical feelings clearly. Some people with advanced dementia may seem to be living in a different reality but it is important to establish the person's feelings and needs behind what they are saying. Despite the difficulties the need to remain connected with other people remains and is essential.
Caregivers' experiences of advanced dementia
Over time, people with dementia experience increasing difficulties with communication. Communication difficulties may mean that communication and social interactions reduce or even stop altogether except during basic activities of daily living. The challenges for family carers are considerable, and are made all the harder by the complexity and constancy of their caring role.
Communication in advanced dementia
People with advanced dementia have differing abilities, and an urge to communicate is always retained. Communication is more than just speech, and non-verbal communication is particularly important for people with advanced dementia. Knowing the life history of a person with advanced dementia is vital in order to get the communication going. We must focus on whatever skills or behaviours a person still has, and use these to try to make a connection and communicate with the person.
What can caregivers offer?
There is much that caregivers can do to support people with advanced dementia. Some basic ways of supporting the person include simply being with the person, offering dignified care, and encouraging the person’s independence even in very small ways. The support of extended family and friends is important during the advanced stage of dementia. Sensory stimulation can be a powerful way of making a connection with a person with advanced dementia.
Access and download additional resources
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to supporting a person with advanced dementia, such as The later stages of dementia(417) and The progression of Alzheimer's disease and other dementias(458)
The healthtalk website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including one section on ‘Deterioration: severe dementia’, which includes six carers each describing their experience of supporting their loved one in advanced dementia.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which it promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Oxleas Advanced Dementia Service: Supporting carers and building resilience
This 2013 resource from The King’s Fund describes how health and social care services in one local area are working together to support people living with advanced dementia in the community.
Supporting people in the advanced stages of dementia
This 2013 workbook from Skills for Care is intended to guide managers in what sorts of knowledge and skills care staff need when supporting people living with advanced dementia. The resource covers a wide range of topics, such as the importance of activity, moving away from a task-based care culture, reminiscence and reflective learning, and includes case studies, top tips and links to supporting resources.