[Skip to content]

Change colour Grey on white Black on yellow
Birmingham and Solihull Mental health NHS Foundation Trust
Better Together
.
Bookmark and Share

Rare dementia service

We are a community based, multi-disciplinary team specialising in rare dementias. We support people of all ages with a diagnosis of a rare dementia, including Frontotemporal dementia (formerly known as Pick’s disease), Posterior Cortical Atrophy (PCA) as well as dementias related to multiple sclerosis and motor neurone disease. The following are not classed as rare dementias: Alzheimer’s, vascular, dementia with Lewy bodies and alcohol related brain damage. Rare dementias usually affect people at an earlier age than illnesses such as Alzheimer’s and tend to present differently, often with behavioural issues. However, some people develop Alzheimer's disease because they have a gene for it and this genetic form is considered a rare dementia.

Our aim is to ensure service users with a rare form of dementia are provided with comprehensive treatments using the best available evidence. We ensure that the person with dementia, their families and wider support networks have their needs assessed, met and monitored throughout the course of their illness, utilising the Care Programme Approach, often working with other organisations such as charities and social care. We provide information, education and psychological support to the person  with dementia, their families and carers.

The Service prides itself on its person-centred approach which we adhere to with all service users, their families and carers.
Our support workers can provide tailored one to one interventions to support  people continuing to carry out the activities and hobbies they enjoy. We offer a group work programme, including a singing group, walking group and art group.

Our aims are as follows:

  • Ensuring service users with a rare form of dementia are provided with a comprehensive intervention (pharmacological, psychological and/or behavioural and practical interventions) service utilising the best available evidence

  • Providing information, education and psychological support to the person with dementia, their families and supporters

  • Ensuring that the person with dementia, their families and wider support networks have their bio-psychosocial needs assessed, met and monitored throughout the course of their illness, utilising the care programme approach, in conjunction and partnership with other agencies

  • Enabling comprehensive service development which aims to meet the needs of the person with dementia, their families and wider support networks at any stage of the illness

  • Providing support through consultation with other trust and divisional services to support people with dementia that do not fall into the RDS category but maybe complex in nature

  • Conducting and disseminate high quality research aimed at improving the well-being of people with dementia, their families and wider support networks

  • Generating and disseminate high quality evidence-based practice

  • Ensure that the service facilitates social inclusion and equitable access across the city


The service can help those who meet the following criteria:


  • People with a confirmed diagnosis that falls under the ‘rare dementia’ definition
  • People suspected of having a rare dementia who are still undergoing the assessment process under our Trust's Memory Assessment Service (MAS).
  • People who are registered with a Birmingham or Solihull GP.


Anyone with concerns about their memory should talk to their GP and ask if a referral to memory assessment services is appropriate.

Contact details for the service:

Rare Dementia Service
Little Bromwich Centre
150 Hob Moor Road
Small Heath
B10 9JH

Tel: 0121 301 5455
Fax: 0121 301 0940

 The Team Comprises:

Team Manager
Consultant Psychiatrist
Consultant Clinical Psychologist
Clinical Psychologist
Associate Specialist
Senior Occupational Therapist
Senior Physiotherapist
Speech and language therapist
2 Community Mental Health Nurses
2 support workers
Admin support

We also work in conjunction with the Alzheimer’s Society and other organisations and services to ensure that we use up to date approaches and evidence to meet the needs of our service users.

Admiral Nurses Direct (Admiral Nurses work with carers)
0845 2579406 or 0121 301 5830

Alzheimer's Society
0121 700 7382

Dementia UK Dementia Advisor
0300 222 1122

Samaritans            
0121 666 6644    

PALS (Patient Advice and Liaison Service)
0800 953 0045