People living with dementia sharing their experiences

Andy talks about his experience of being diagnosed with dementia 

Andy shares the impact dementia had on his occupation and tells us of a negative experience he had with a doctor 

Andy tells us what he feels healthcare staff need to know about dementia. He discusses certain fears related to his experiences of healthcare.  

Andy shares how a dementia diagnosis can overshadow other conditions and the difficulty being able to express needs. 

Andy describes his hopes and fears about care homes 

Andy speaks of the importance of age-related activities for younger people with dementia in care homes 

Andy relays an experience of poor communication in a hospital setting 

Andy shares the difficulty he had with regards to his partner not having legal rights to information about him 

Andy speaks of his depression and fear post diagnosis 

Andy speaks of his right to decline medication and the importance of trying other things before opting for sedative drugs 

Hilary speaks of her experience and symptoms leading up to her diagnosis of dementia 

Hilary shares her experience in the workplace while living with dementia 

Hilary has concerns for the future, but mentions she has had good experiences of care homes through the work she does 

Hilary shares her feelings of vulnerability in living with dementia 

Hilary speaks of her positive hospital experience, although relays one very sad encounter with another patient 

Hilary advises on practical tips with regards to personal care

Nigel describes being treated as ‘less of a person’ due to the presence of dementia

Nigel speaks of being seen through the prism of dementia

Nigel speaks of human rights and prejudice in disability and dementia 

Nigel expresses his feelings on being referred to a psychiatrist on diagnosis, despite having no psychiatric symptoms 

Nigel describes the notion of ‘prescribed disablement’ in dementia diagnosis 

Nigel speaks of dementia as a disability and that there is hope for people to live a good life 

Nigel speaks of stigma and the medical model  

Nigel explains why people resist care and speaks of the importance of care fitting the needs of the person 

Nigel says “If it’s not good enough for your mother, it’s not good enough for us” 

Nigel describes how he would like to be treated if he were to ever live in a care home 

Nigel relays his fears and concerns about how he might be treated if he were to live in a care home 

Shelagh Robinson describes her experience of being diagnosed with dementia  

Shelagh Robinson explains how, for her, it is harder to be a carer of a person with dementia than having dementia itself 

Shelagh Robinson shares her feelings of being excluded following her diagnosis of dementia 

Shelagh Robinson shares her opinion that sometimes human rights can be used in the wrong way 

Shelagh Robinson speaks of the experience of incontinence 

If you are living with dementia and are interested in sharing your experience, please get in touch.