The 17th – 23rd of May is Dementia Action Week - a national event that encourages people to take action to improve the lives of people affected by dementia.

What is Dementia?

Dementia is the term for a collection of symptoms that result from damage to the brain caused by different diseases, such as Alzheimer's. These symptoms vary according to the part of the brain that is damaged.

Some common early symptoms are: memory loss, difficulty concentrating, struggling to follow a conversation or find the right word, mood changes and being confused about time and place. 

As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages, the person is likely to neglect their own health, and require constant care and attention. Other common symptoms of advanced dementia include: mobility problems, behavioural problems including increased agitation, depressive symptoms, anxiety, wandering, aggression, or sometimes hallucinations, incontinence and loss of appetite and weight loss often linked to trouble eating or swallowing.

Beneficiary Stories

Below are three stories of how POhWER has helped people with dementia to uphold their rights and be heard.

Beryl's Story

Beryl has advanced dementia and had been living at home with her husband Alan. They have no close relatives but were supported by a friend. Alan realised his wife was unwell, and she was sectioned under the Mental Health Act and taken to hospital. Alan was frail himself, sometimes struggling to care for Beryl, and when admitted she was in a state of neglect. Alan believed her illness was temporary, and expected his wife to return home.

Ward staff requested an Independent Mental Health Advocate (IMHA) to engage with Beryl. POhWER IMHA Connor accepted the referral which included supporting Beryl, upholding her rights and explaining to Alan the processes supporting Beryl’s care and treatment and his rights as the Nearest Relative.

Staff advised Beryl could be difficult to approach and might not engage, but when Connor met Beryl he noticed her carrying a cuddly toy and engaged with her by asking about it. Beryl talked at tangents, often with no reference to the question asked. She seemed to regard Connor as friendly however and happily sat and chatted with him.

Connor realized he would need to advocate in Beryl’s best interests and ensure her rights were upheld as she was unable to instruct him herself. Connor talked at length with Alan and their longstanding friend, Pauline, explaining his role as Beryl’s IMHA, and Alan’s rights as the Nearest Relative. He also reviewed Beryl’s case notes and built up a picture of Beryl, her life experiences, and her character when in good health, to gain an insight into her values.

Connor worked with Beryl’s doctor, ward staff and her Approved Mental Health Professional, (AMHP) to explore the least restrictive options available to Beryl. Initially professionals said Beryl would need a minimum of three carers, three times a day as she had sometimes strongly resisted care, (for example being washed) and were concerned this couldn’t be managed well anywhere but in hospital or a Nursing Home.  

Alan and Pauline had explained that Beryl would not want this, and would want to return home, and for that reason they were strongly against this plan and keen for Beryl to return home. 

The doctor wanted to discuss moving Beryl to a Nursing Home. At a meeting about hospital discharge and aftercare, staff confirmed Beryl’s condition had improved, only needing two staff to provide care. The AMHP indicated that being at home would give Beryl the best quality of life, (with home adaptations and an appropriate package of care) and would be the least restrictive option.

Connor suggested Beryl trial a new package of home care before a move to a Nursing Home was considered.  The doctor conceded to this and Beryl was given six hours of leave daily to go home and spend time with Alan and Pauline with support from carers. If this goes well she will be discharged to live at home.

Karim's Story

Karim is a patient on a male dementia ward. Karim is a non-instructed patient meaning that he qualifies for advocacy support but lacks the capacity to instruct an advocate.

Karim had a Care Programme Approach (CPA) review meeting coming up and no family or friends for the assessor to consult with. A CPA meeting is where mental health services assess your needs, plan ways to meet them and check that they are being met. Your needs and the plan are reviewed regularly.

Karim gets very agitated when people approach him and can become physically aggressive, particularly if the ward is very noisy or busy.

Lucille, a POhWER advocate, visited Karim when the ward was quiet and sat in the lounge area where Karim could see her. Lucille made sure not to make eye contact and waited to see if he would approach her. Karim watched Lucille for a while before he came over and said a couple of words to her and then walked away. He did this several times and each time Lucille responded in a quiet low voice.  Eventually Karim came and sat in the chair next to Lucille and they had a long conversation. Karim was quite confused at times but Lucille was able to glean a few insights into how he felt about his current treatment and his wishes for the future.

Lucille gave feedback about Karim’s thoughts and wishes to the assessor who used these in the CPA review meeting to inform the plans for Karim’s treatment and support.

Clive's Story

Clive is 81 years old and has dementia and diabetes and is a wheelchair user. He recently had a heart attack and was treated at a local hospital. Clive contacted POhWER to help him to raise a complaint about the care he received while he was in hospital.

POhWER NHS Complaints Advocate, Chen, was allocated to support Clive.

Chen phoned Clive and introduced herself. Clive told her about his complaint. 

A nurse on the ward had become frustrated with him for not remembering the things she had told him. She made Clive feel unwelcome and suggested that he pay for private treatment as the hospital didn’t want to look after him anymore. There was also an issue with the food and drinks that the hospital brought to him. Clive’s sugar levels were very high but even though he tried to explain that he needed a drink but couldn’t have sugar the nurses still brought him mugs of sugary tea to drink. This was dangerous because he is diabetic. Clive feels no one listened to him. He had to trust the NHS with his life and feels his care was poor. He would like the nurse to take responsibility for her actions, recognise that she treated him badly and to explain why she did it.

After he finished talking to Chen about his complaint he said ‘I’m so glad I spoke to you, you are a kind person and have listened to my problem.’

Chen explained the complaints process to Clive and the options he had. She also outlined the ways in which she could help him at each stage. Clive decided he would like to submit an official complaint in writing.

Chen put together a Client Advocacy Plan which contained a summary of Clive’s complaint, the actions that they had agreed they would take and how she would support him. She gave him a hard copy of this and Clive found this useful as a reference point and a reminder due to the memory issues caused by his dementia.

Chen helped Clive to draft a letter of complaint to the hospital and submitted it on his behalf.

Chen regularly phoned Clive to keep him updated on the progress of his complaint. When she called him, due to his dementia Clive often forgot who Chen was and how he knew her, so she always took the time to reintroduce herself and re-explain her role as his advocate.

Chen has been informed that a final response letter has been sent to Clive by the Hospital Trust. Chen and Clive have a meeting booked to review this letter when it arrives and discuss what Clive would like to do in response to it. Chen will explain his options to him and if he requests support she will help him with his next steps in the process.

By supporting Clive, Chen is helping him to uphold his human rights to Freedom of expression and Protection from discrimination under articles 10 and 14 of The Human Rights Act 1998.