By ALISON BELLAMY

It is commonly referred to as ‘losing your marbles’ but when dementia strikes, it can have a devastating impact, not just on the older person affected, but on the family as a whole.

Dementia is a set of symptoms which affect a person’s thinking and short term memory. There are two main types: Alzheimer’s disease, for which medication can be given and vascular, for which there is no medication to aid it.

Vascular can be sometimes caused by an impaired supply of blood to the brain, or due to a series of small strokes.

Overall, dementia generally affects people over 65, but some as young as 50, have been diagnosed.

Support is available to help people live well and comfortably and to adjust to their way of life, which usually has to be altered.

 

The Touchstone Centre provides arts sessions and other support for people with Dementia
The Touchstone Centre provides arts sessions and other support for people with Dementia

Ripaljeet Kaur, is a specialist in dementia for black and minority ethnic (BME) older people, at the Touchstone Centre, in Harehills, Leeds, West Yorkshire.

 

Touchstone offers many different kinds of support and works to provide mental health and wellbeing services to more than 2,000 people a year. It encourages people to grow confidence and capacity to demand the services and positive experiences they are entitled to.

Ripaljeet said: “Having a traditional extended Asian family with lots of relatives is often a blessing, but can sometimes ironically make life difficult for both the person with dementia and the health care team involved.

“It can be a case of ‘too many cooks spoil the broth’ as everyone wants a say in what is happening or the best course of treatment.

“It can cause unease and rows within the family, which is not good for anyone.

“Quite often, difficult decisions have to be made, sometimes quickly or immediately and the primary carer won’t agree with secondary carer or others, so it can become tense.

“There may not be time to consult all family members who often like to debate and maybe argue over things, especially if they live some distance away.”

There is often a stigma of being too ashamed to ask for help and not wanting to embarrass the family by having a relative with such a debilitating illness.

“It can certainly be a stigma having an elderly relative with dementia,” says Ripaljeet.

Ladies on a carer's course run by the Touchstone Centre
Ladies on a carer’s course run by the Touchstone Centre

“I have known of some cases where people believe dementia is a sort of black magic curse and can be treated as if it is a mental illness by some, especially if people start to get hallucinations or begin acting in an unusual manner. It can be frightening for carers. But help is available.”

Touchstone is running a monthly dementia cafe called ‘Hamari Yaadian’ cafe which means ‘Our Memories’ in Urdu, Punjabi and Hindi. It welcomes those with dementia and carers to attend and share experiences.

Ripaljeet added: “It is a time for those with dementia and their carers to get together and share what they are going through. It can offer support at a difficult time.”

The West Yorkshire Playhouse in Leeds, is running dementia friendly performances on stage, which are proving popular.

Typical symptoms of Alzheimer’s include:

  • Regularly forgetting recent events, names and faces.
  • Becoming increasingly repetitive.
  • Regularly misplacing items or putting them in odd places.
  • Confusion about the time of day.
  • Disorientation, especially away from your normal surroundings.
  • Getting lost.
  • Problems finding the right words.
  • Mood or behaviour problems such as apathy, irritability, or losing confidence.

Symptoms of vascular dementia:

  • Becoming slower in thinking.
  • Personality changes including depression and apathy (becoming disinterested in things).
  • Becoming more emotional.
  • Difficulty walking or changes in the way a person walks
  • Frequent urge to urinate or other bladder symptoms. This can be common in older age, but can be a feature of vascular dementia when seen with other symptoms.

Alzheimer’s and vascular dementia can get worse over time, but the speed of change varies from person to person.

Dementia Case Study

The Khatoun family have agreed for Asian Sunday to feature their experience as a case study.

Zubeida Khatoun, in her 70’s, was diagnosed with vascular dementia two years ago. She is now in the mid stages of dementia. She lives with her husband, Mohammed, who is her main carer.

After diagnosis, the couple struggled to cope with the illness, as the condition progressed quite quickly.

Mr Khatoun had no understanding about the condition and how to deal with behavioural symptoms. He felt that there was stigma attached, as they had stopped going to their regular groups. He was quite reluctant to seek help from outsiders due to worrying that might not find culturally appropriate services.

He also thought that a person with dementia was someone possessed. This fear was increased when wife would often talk to herself and mention blood.

The family were given extra support and provided one to one chats in their mother tongue about dementia and given written information.

They were told that dementia is common within ethnic communities, and given a few anonymous examples from their local community. This helped as they realised that it was not just them.

It was also explained to them the benefits for both of them to attend the activities and groups available to offer support. They were matched with activities which would suit them and make them feel comfortable.

The Iqbals were told about effects dementia would have on other people’s behaviour towards them, as quite often people do not know anything about it.

While talking about her past, it came out that Mrs Iqbal had witnessed her father’s fatal accident when she was eight-years-old. She was very close to her dad and would mention him a lot. It was explained that it could be that her early memories coming back.

After support was put in place, the couple had a much better understanding of dementia and how to cope with her change of behaviour.

They now attend the ‘Hamari Yaadain’ café regularly.

Mr Khatoun has started attending another group while a suitable female sitter, from their cultural background and speaks their language, spends time with his wife.

There is now a much better relationship between the pair. Overall, they have more confidence and have reduced their social isolation.

*Names have been changed.