Louisa’s story

22 May 2015

Thinking creatively to deliver support that works for Louisa.

Louisa has a diagnosis of dementia and lives at home, supported by her husband Ivor..

..but family support has its limits and the level of support Louisa needed was ever increasing.
Ivor started the process of getting further help by requesting a social care assessment. They found themselves in the world that so many occupy – Ivor trying his best to support his wife and at the same time trying to navigate the health and social care system to make their lives easier.

Ivor found a lot of dedicated, hard-working health and social care professionals and systems that worked well in some respects but badly in others. He was finding supporting Louisa on his own more and more difficult because Louisa would follow him around the house. If she weren’t doing this then she would go outdoors and walk for miles so he would spend hours looking for her. It was clear that Ivor needed a break if Louisa was to continue living at home. A social worker arranged to carry out an assessment.

From the assessment this is Louisa’s outcome:

‘’ To have meaningful occupation and support during the day to enable her to stay living at home’’

What was offered to Louisa to meet this outcome in the first instance was the default traditional option – two days per week in day care provided in a in a residential home.

If we think this through from the perspective of Louisa this is a very curious solution – given she was following her husband around the house, it clearly indicated she wanted to be close to him.  Or the alternative was she would go outdoors and walk.

To separate Louisa from Ivor for hours on end in a place which has locked doors seemed counter intuitive. When Louisa was taken into residential care, she was unsurprisingly, very distressed, agitated and unwilling to engage. She became so desperate to leave that  her behaviour spiraled into violence.

One might imagine Louisa sitting in her front room with her coat on because she’s been told the social services bus will arrive around 10am, Ivor sat opposite her. Its perhaps going through her mind ‘I’ve got my coat on so we must be going out somewhere together’.

The bus arrives, she gets up, goes down the garden path, Ivor follows, the door of the bus opens – she gets in fully expecting Ivor to get on with her and the door behind her closes and Ivor hasn’t got on.

She doesn’t know if she will be returning and she doesn’t know why she has been separated. The bus drives off and what happens now is she will be driven around the town for about an hour and will stop on a further 5 occasions.  On those 5 occasions another strange person will get on. There is no sense of community, just simply 5 equally anxious people who are on a bus. Eventually Louisa arrives at a building she’s never seen before and enters this building among a group of strangers.

We know that Louisa lives in the now – so every moment Louisa spends in a place she doesn’t recognise may be frightening and intimidating to her. And the doors are locked and she cannot get out.

Louisa is then put back on the bus and it all happens again in reverse but she ends up back in a place which she never wished to leave.


Is it any wonder she suffered a catastrophic decline?

It’s quite obvious to me that simply referring people living with dementia to a day service as a default option does not work. There is a naivety in thinking that a traditional service will help everyone that accesses it. To truly provide support we have to learn about the person and not just consider the disease. We have to ask ‘is this person likely to benefit from spending time with other people in a day service?’ If no, is it possible to shape a more personalised individualised approach to their day?

To create a personalised individual approach, we need rich information that tells us about the essence of a person. We don’t often get a balanced view of who a person really is and what they really want through traditional traditional care and support planning. And that is absolutely what is needed for a person to get the support that will actually work well for them. We also can’t decide on outcomes for a person without first knowing what is most important to them and knowing how best to support them from their own perspective.

This is the information we need to ensure a person’s support is tailored to their needs and aspirations and that is the very bedrock of personalisation.

Day service did not achieve Louisa’s outcome to have “meaningful occupation and support during the day to enable her to stay living at home’’.

Here is what the social worker arranged instead:

They found a small local agency that Louisa and Ivor were happy with after meeting with them and making clear Louisa’s requirements. These included having a team of no more than 3 people supporting her from the agency and they needed to understand and agree key ways of providing support. The arrangements were put in place and started to work well.
• Louisa went to the Crown Green Bowling Club with support from one of the identified workers one afternoon a week

• She was supported in her home or to go out walking by the same provider on another afternoon each week.

• Louisa joined a timebank and contributed 2 hours each week ironing. Something she enjoyed and was extremely good at – she took back two hours and was supported by another timebank member who would sit and read to Louisa.

• She shopped at Tesco supported by a dementia friend one afternoon per week and they also went in the cafe

• They are also exploring how assistive technology may help. Louisa has a buddy system so as if she does go out Ivor can find her quickly.

Louisa and her family found this a creative and flexible approach to supporting them and it cost less than two days per week at day service.

This type of personalised support doesn’t impose scary and traumatic changes. It allows a person to continue to live their life, as normally as possible, and gives them meaningful occupation and their families respite.

This type of support moves us away from those care plan tick boxes that often focus on a person’s physical needs without also paying good attention to what matters to people.

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