Cork-based Crystal Project supports those with dementia and Alzheimer's

An outpouring of praise was awarded to Anthony Hopkins for his nuanced portrayal of someone with dementia in the recently released movie, The Father. This Cork-based initiative helps patients, like Hopkins' character, at all stages of a diagnosis.

Tue, 07 Jun, 2022 - 06:00

Helen O’Callaghan

Seeing the changes in your loved one is scary. There’s a point at which you can’t ignore it anymore – the way they tell the same story twice in the one phone call, or ask what day it is five times in an hour, or say they definitely met their best friend yesterday when you know that happened three weeks ago.

For individuals and families at any stage of a journey with dementia, an award-winning community project based at Mallow Primary Healthcare Centre is offering practical, positive, empathetic support. It’s available to people living in North Cork, though some services are also open to those outside the region.

Led by the HSE North Cork Occupational Therapy department, The Crystal Project involves collaboration between HSE, Alzheimer Society of Ireland, Ballyhoura Rural Services, families affected by dementia, UCC and local community groups.

Sheena Cadoo, occupational therapist and Crystal Project lead, says the point at which families come for support varies. “Some come quite soon after a diagnosis. Others have family members in long-term care. They might want to chat about maximising their visit, making it more enjoyable.”

Open since 2013, the Memory Resource Room at the healthcare centre was the first of its kind in Ireland and is the Crystal Project base. Services offered here include ‘brain health’ groups for anyone interested in learning memory strategies. Someone concerned they’re forgetting certain safety measures – locking the door, blowing out candles, unplugging the iron – could use a strategy like saying aloud the safety actions they’re taking: ‘I’m pulling out the iron, I’m wrapping the cord around it, I’m placing it on the table’.

“It’s about turning off the autopilot, focusing and attending to the task. Saying it aloud, you hear it back – and are less likely afterwards to forget you did it,” says Cadoo, who works very closely with Alzheimer Society of Ireland dementia adviser Amy Murphy.

There’s also individual goal-focused therapy for someone diagnosed with dementia. “I meet them for a six to eight-week block of OT sessions, where they identify three/four goals they’d like to work on. Perhaps being better able to manage their money, remember to take their medication or recall their grandchildren’s names,” says Cadoo.

Subsidised counselling is available for individuals with dementia and for family members. “Anxiety is huge if you’re facing every day with dementia. It can be daunting going places, meeting people – not remembering who people are. Short-term memory loss can make it difficult to maintain a conversation, perhaps to find words. The person’s afraid of saying the wrong thing.”

And for family members – e.g. spouse or child supporting their partner/parent with dementia – it can be very difficult on a practical level, but also emotionally. “They’re concerned for their loved one, for their future. It can be difficult to see the changes. For example, for a child whose parent was always the person they confided in, sought advice from. The person with early dementia may not be confident engaging in these conversations anymore, fearing they won’t remember what they’ve been told already.”

Families can also avail of information sessions and support groups, and Cadoo says many helpful coping tips emerge at these. Some are around communicating with the person with dementia. “It’s really important the relationship with the person is maintained, that interactions and communication are positive.”

This means that you don't correct the person, or argue with them. “This can affect their confidence and cause them to withdraw,” explains Cadoo.

Other helpful communication tips include avoiding giving too much information in one sentence, or giving information too far in advance of an event (to minimise anxiety), or talking about the person in their presence. “And use the person’s name – ‘Mum, it’s lovely to see you’. This can help get their attention. Show. Don’t tell. For example, if you’re keeping the person involved in family life and you ask them to set the table, show them how to set the first place. They might understand the visual, if not the verbal.”

Cadoo says feelings remain when facts are forgotten – useful to remember if you find it challenging visiting and communicating with your loved one in long-term care.

Don’t focus on ‘what did you have for dinner yesterday?’ or ‘what did you do at the activity group this morning?’

"Reduce the questioning,” says Cadoo, who recommends family members focus instead on communication through reminiscence. “As dementia progresses, reminiscence is really good because long-term memories are often preserved and the person can be more confident talking about the past.”

She suggests helpful aids to reminiscence. “Pull up old music familiar to them on YouTube or theme tunes of familiar TV programmes and talk about the memories – Glenroe on Sunday evenings.

“And if someone’s forgetting details about their grandchildren, make a family book with photos of family members, their names, ages and what they’re doing (e.g. school, college, new job). “Rather than saying ‘here’s a book to help you remember’, present it as a gift, as in ‘Wow! Mum this is your family. Look at this family you’ve created. Isn’t it great to see what X is doing?’ This might help the person orientate towards their family.”

From fun memory games with proverbs – a family member starts off a proverb and the person with dementia tries to finish it – to info about a phone app that allows the person to go for a walk independently while their family can see where they are, The Crystal Project has a wide range of suggestions and supports for the various stages of this devastating disease.