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Posted on 15 May 2023

Dementia Action Week takes place from 15 to 21 May with theme diagnosis.

With a sustained drop in dementia diagnosis rates according to the Alzheimer’s Society, they have undertook research to understand the key barriers to and benefits from getting a diagnosis. As well as misconceptions around memory loss being a normal part of ageing, they found being in denial and specialist referral times are the biggest barriers to getting people to seek a diagnosis. Research shows that the biggest barrier stopping people seeking a diagnosis was thinking memory loss is a normal sign of ageing.

For Dementia Action Week (15-21 May), we’re sharing a story about Zofia* (86) and daughter Monika* (55). Zofia has suffered from dementia for over 10 years and her declining ill health has meant that Monika has had to give up work to care for her mum. Monika says without the valuable care and support from the Nottinghamshire Healthcare’s Bassetlaw Community Mental Health Team she would not have been able to cope.

Monika’s story:

“I’m originally from Poland and came to work in the UK after being offered a manager’s role at a retail outlet” explains Monika. “My mum, Zofia, remained in Poland to care for my children, until I had everything in place to bring them to the UK.

“However, Mum had a period of stay in hospital due to being hit by a car. After the accident and during one of my visits to Poland, I could see her health had deteriorated and realised how bad her memory problems were.

“Mum didn’t recognise me… To see mum deteriorate was very sad”

“Then Covid struck, and I was unable to return back to the UK. Mum sometimes didn’t recognise me, struggled to understand why she had to wear a mask and was upset that she couldn’t go out. I couldn’t get support face to face as GPs weren’t seeing anyone. To see my mum deteriorate was very sad.”

In between Covid restrictions being lifted, Monika managed to come back to the UK with her mum and after seeing a GP, a dementia diagnosis was established, and a referral made for Zofia to see a psychiatrist and a dementia specialist.

The Trust’s Bassetlaw Community Mental Health Team has supported Zofia with physiotherapy, occupational therapy and specialist dementia care.

Joanne Appleby, Occupational Therapist, supports and cares for Zofia and Monika, helping with day-to-day issues to help make life that little bit easier and said:

“Zofia experiences double incontinence, occasional hallucinations, disrupted sleep and is unable to wash or dress herself without assistance. She also speaks no English so the majority of care falls to Monika which has been tough for her. Monika is incredibly pro-active though and provides a huge amount of stimulation for her mum every day to maintain her cognition and quality of life.

“I’ve supported Zofia with obtaining bathing equipment to enable Monika to support her mum to bathe safely, a winter warm pack so Zofia could be warm and more comfortable at home and supporting Zofia to receive a ‘Just Can’t Wait continence card’ to enable her to have access to more toilet facilities when outside of the home. I’ve also supported Monika with applying for disability related expenses in the financial contribution for care to enable the family to have more money in their pocket and access to a wide range of carer support.”

Every fortnight, Theresa Connolly, a Community Support Worker, visits both Zofia and Monika supporting her with telephone calls and correspondence regarding Zofia’s care package including access to benefit advice and signposting to social groups to reduce social isolation.

Krishna Bollina, Physiotherapist, has also supported Zofia with awareness of muscle loss, resistance, strength and balance exercises and support with range of movement and strength using practical tasks.

Zofia added “Theresa, Joanne and Krishna have all been amazing and have not only been here for Mum but for me too, helping me with paperwork, financial support and contacts that would help Mum. Joanne even made an effort and wrote some words in Polish so my mum could understand what was being written which is really fantastic and a personal touch. We’ve had great NHS support.”

Zofia has also been referred to Green Social Prescribing, a way of connecting people to nature-based activities and green groups, projects and schemes in their local community for support with health and wellbeing.

“Mums true passion is gardening, so it has been fantastic that we’ve been able to have this option for her to give her a purpose in life and for to be active” says Monika. “Mum has a personal assistant who has built a good rapport with her despite the language barrier, and she takes her to our allotment or the shops for 2 hours a day Monday to Thursday to give me some personal time.

“I had a mum, a friend and now I have a child”

“Mum is very aware that she has dementia, and it gets very frustrating for her, and she says she is useless. However, I continue to build up her confidence and show she is still valued. As well as gardening mum loves playing her harmonica and looking after our 3 black cats, Bigos (Cabbage) Zurek (soup) and Aldi, after the supermarket.

“I don’t work now and I’m mums full time carer along with my husband who provides for us both. It’s very difficult to live with a dementia patient in the family. It has taken away her emotional attachment. She can formulate her needs but there is no more love - that is going, and it is painful when she doesn’t recognise me. She is very kind natured but is very demanding and this affects my private life.

“It is traumatic to think that the person who is your mum and the person you are looking after is suddenly becoming your child. I had a mum, a friend and now I have a child.”

Our Community Mental Health Teams for Older People provide high-quality interventions for those experiencing complex mental health issues including all forms of dementia, clinical depression, severe anxiety and psychosis.

The team consists of a range of health professionals with specialist training to enable them to meet the needs of older people. These professionals include Community Psychiatric Nurses, Consultant Psychiatrists, Occupational Therapists, Physiotherapists, Community Support workers and Psychologists. The team work collaboratively and holistically to assess mental health needs, advise on medication, assist with problem solving and on the development of coping strategies, support the carer and make onward referrals to other organisations for packages of care, benefit advice and more. Find out more about this service: https://www.nottinghamshirehealthcare.nhs.uk/community-mental-health-team-cmht-for-older-people-

*Pseudonym names have been used.