Receiving a dementia diagnosis can be an overwhelming and isolating experience for many, with patients and families often left to navigate the journey alone, with little or no support from the healthcare system.
That’s where charities like Dementia UK step in to offer lifechanging services and resources, including a free, confidential helpline.
Here, Sheridan Coker, Deputy Clinical Lead at Dementia UK, shares the most common reasons why families reach out to the Admiral Nurse Dementia Helpline, and the kind of advice specialist nurses provide in response.
Understanding dementia and its symptoms
Callers often seek guidance on what a diagnosis means, the progression of dementia, and what changes to expect, in terms of memory or behavioural issues. Our Admiral Nurses:
- Explain the type of dementia (if known) - Alzheimer’s, vascular, Lewy body, frontotemporal, and typical symptom progression
- Clarify the cognitive, emotional, and behavioural changes that can occur
- Provide personalised explanations, and signpost to resources tailored to individual needs
- Validate and reassure callers about their personal experiences of symptoms, and provide tailored strategies to support and manage symptoms where possible.
Understanding and managing changes in behaviour and symptoms of anxiety or distress
Families/carers commonly seek advice on coping with behavioural changes such as agitation, confusion, or sleep disturbances, as well as everyday practical care, including personal hygiene, nutrition, and medication management. Our dementia specialist Admiral Nurses offer expert guidance on how to navigate these changes, such as:
- Practical strategies for managing distressed or repetitive behaviours
- Advice on communication techniques that respect the person’s dignity and identity, to reduce fear and anxiety – and therefore stress
- Guidance on sleep hygiene, nutrition, and personal care routines.
Understanding and navigating support services
Many callers enquire about what local or national support services are available to them, including community Admiral Nurses, healthcare teams, respite care, and benefit entitlements. Nurses provide signposting and guidance to make navigating complex care systems easier. For example, they:
- Signpost to community support services, specialist nurses (such as Admiral Nurses), healthcare teams, day care and respite options
- Help families navigate adult social care options and responsibilities
- Discuss and signpost to NHS pathways, and other support services such as local 3rd sector options
- Explain entitlement and application options for benefits, Continuing Healthcare Funding (CHC), and legal planning, such as Lasting Power of Attorney – and provide relevant signposting.
How to get a diagnosis, or how to support someone to get a diagnosis
The Helpline receives questions from individuals who suspect they may have dementia about how to pursue a diagnosis, what assessments involve, and what steps to take going forward. Our Admiral Nurses offer advice on preparing for appointments and understanding available diagnostic pathways. We also receive many calls from worried family members and friends who need information on how to support their loved one to get a diagnosis, especially where denial or lack of insight is an issue for the person with potential dementia symptoms. The nurse will:
- Outline the diagnostic pathway, including GP referral, cognitive assessments, and memory clinic evaluations
- Explain the steps before, during, and after assessments, preparing families and individuals for what to expect at appointments
- Discuss how early diagnosis can guide advance care planning and allow timely access to support services, and benefits
- Identify resources for coping with uncertainty and the emotional impact of a potential diagnosis.
Managing Carer Wellbeing: How to look after yourself as a carer
Carers frequently ask for guidance on coping with feelings of guilt/grief, stress, maintaining their emotional and mental health, and balancing caregiving responsibilities with personal life. Admiral Nurses provide emotional support, practical guidance, and resources for self-care and resilience. They also:
- Support carers to recognise and manage stress, feelings of guilt and grief, along with fatigue and emotional strain
- Provide advice and strategies for maintaining mental health, and signpost to appropriate services that provide relevant support
- Advise on balancing caregiving with personal life, hobbies, and rest – and discuss potential support services
- Signpost to peer support/online forums, local support groups, or respite services to prevent burnout/carer breakdown.
These are some of the most common enquiries handled by the Helpline. However, dementia specialist Admiral Nurses are there to provide tailored advice, guidance and support around dementia or dementia care generally, whatever the initial question is. Often, a caller will have a primary concern that the Admiral Nurse addresses while building an understanding of the person's overall situation and needs.
If you need advice or support around dementia, you can call the Admiral Nurse Dementia Helpline on 0800 888 6678 or email