Support following a diagnosis of dementia
Reactions to a diagnosis of dementia can vary from relief to a mixture of fear, anger or denial. Helping people come to terms with their diagnosis, to make decisions and plan ahead is critical in supporting them to live well with dementia. This section looks at managing symptoms for day-to-day living, staying healthy, planning for the future, safeguarding people with dementia and accepting the diagnosis of dementia.
Discussing and planning support after diagnosis
A quick guide for people with dementia and their family and carers.
Try to value what a person with dementia can do rather than focus on what they can't do. Managing the symptoms of dementia can help people stay in control of their lives. Care workers can play a vital role in helping a person with dementia to maintain their independence and confidence. Patience, respect and being a good listener are key qualities in providing the right support to people with dementia and their friends and families.
It is easier for someone with dementia to take on new challenges and lead a meaningful and positive life when they feel well. Regular eye, hearing and dental checks are critical in maintaining good health and wellbeing. Care workers have an important role to play in encouraging and supporting people to stay active. Illness and the possibility of being admitted to hospital may cause great anxiety and stress and potentially affect a person's ability to remain in their own home.
Planning for the future
Planning for the future enables people to play a key role in making important decisions on their care needs, and financial and legal affairs. In time, dementia will make a job too difficult to do and the person will eventually have to give up work. Having to give up driving can have an impact on how and where a person lives and their freedom to do things.
Safeguarding people with dementia
Many people report feeling uncomfortable around people with dementia and unaware of how to help someone who has it. A care worker has a key role to play in helping to ensure a person with dementia lives safely in their own home. As a person comes to terms with a diagnosis of dementia and adapts to their new life, they may become vulnerable to abuse. It is important that people requiring care and those providing care have a common understanding of human rights.
Many people diagnosed with dementia believe that very little can or will be done for them, particularly in the early stages. Good advice and support are available from a wide range of health professionals and organisations, dementia charities and older people's organisations. A growing number of peer support groups play an important role in helping people to come to terms with their diagnosis. Dementia cafes and internet forums provide valuable advice and guidance for people with dementia and their carers.
Information for commissioners
Local commissioners should make sure the right services are in place in their area, so that people living with dementia and their carers get the support and services they need.
Useful links Open
The Alzheimer’s Society produces a range of resources, including the 2017 publication The dementia guide (available online and in hard copy) aimed at people with dementia and their carers immediately following diagnosis. The Society also publishes over 80 factsheets including After a diagnosis (471), Coping with memory loss (526), Staying healthy (522) and Staying involved and active (505).
This 2008 Health Scotland publication is written for people newly diagnosed with dementia. It covers topics such as ‘Staying well’, ‘Practical support’ and ‘Planning for the future’.
Living well with dementia: practical tips and advice
In this NHS Scotland film a number of people with dementia share practical tips for managing day-to-day living with dementia, such as putting up signs and instructions in the kitchen for safer meal preparation.
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.
An NHS Choices film about memory cafes and how they offer people with dementia and their carers the chance to socialise and share information. Here, one group talks about what the experience means to them and how the specific activities offered at the café benefit them.
Still going strong
This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.