The members of the National Dementia Carers Action Network (NDCAN), assisted by Alzheimer Scotland’s Active Voice Team, recently produced a leaflet which has focused on appropriate strategies and skills for carers who are supporting persons living in the advanced stages of dementia. This is the ninth leaflet of a series to have been published under the general heading of “For Carers, By Carers”. In common with the previous ones, it is aimed at giving advice and encouragement to those undertaking their devoted and well-targeted duties. Essential tasks undertaken prior to the publication were based on a thorough analysis of the challenges and chores which carers had experienced and in identifying feasible resolutions and successful routines.
The leaflet presents a synopsis of how alertness and care regarding vulnerable persons can be operationally apposite and planned to maintain a high standard of provision. At all stages, arrangements will require to be well-focussed on each individual’s particular needs in order to take full account of the tasks which have to be faced. While noting there is no single agreed definition, set pattern, or timeline for advanced dementia, it highlights general principles and practical tips which, on many occasions, have been shown to be both relevant and advantageous. Throughout the leaflet there is a series of quotations from experienced carers expressing their personal views on practices which they have found to be applicable.
From the outset, it is stressed that an essential aspect of effective caring is for carers to look after themselves as their own good health and wellbeing will strengthen and reinforce the quality of the first-rate daily care and comfort which they want to deliver. It emphasises that, if a carer is feeling stressed or overwhelmed, they should not hesitate to seek help and guidance from other carers, family and friends, professionals and local services. Advice, counselling, and moments of relaxation can make a colossal difference.
A wide range of helpful suggestions is included regarding important topics such as: providing daily care and comfort; responding to changes in behaviour; support with eating and drinking; being well prepared for the effectual management of difficulties relating to incontinence; emotional and sensory connection; and practical aids and adaptations. As elsewhere in the leaflet, methods concerning advantageous procedures and interventions are outlined briefly in each of these areas. All are worthy of thoughtful consideration when caring for persons in the advanced stages of dementia.
In the closing remarks carers are reminded that there is no single “right way”. They are encouraged to assess their own practices and to discover which approaches work best for both themselves and those receiving their care. Situations will change and plans for both carers and those living with dementia will require to be reviewed. If help is needed, carers should not shrink from requesting assistance. Even in their most challenging and darkest moments, it is essential that they should remain assured that they are not alone. Giving them a true voice will safeguard a sense of authentic togetherness. Advice, compassionate inspiration, and genuine empathy should always be within reach.
The new leaflet "For Carers By Carers - Caring for a person in the advanced stages of dementia" can be downloaded, here: https://www.alzscot.org/wp-content/uploads/2026/04/For-Carers-By-Carers-Advanced-stages-of-dementia-002.pdf
National Dementia Carers Network (NDCAN) is a national member-led campaigning and awareness-raising group of current and former dementia carers in Scotland. More about NDCAN: https://www.alzscot.org/campaign-for-change/active-voice/national-dementia-carers-action-network/
With thanks to Frank O Hagan, NDCAN member for writing this article.
