Graham and Sue’s story

In a labyrinthine social care system, many families with dementia can struggle to access support. Social care services meanwhile may struggle to provide this support due to limited resources.

Here is the story of Graham and Sue*, a couple based in New Zealand, and the vital role of the Helpline in helping them through a system which urgently needs more funding.

Living in New Zealand trying to support Mary, Graham’s elderly sister, who is diagnosed with dementia in the UK is challenging enough. When we arrived in the UK to support Mary following a call from a worried family member, some of her neighbours informed us that she was wandering the streets and not showering. We were distressed at how challenging it was to get the social care that she so desperately needed.

Fragmented, under resourced and underfunded services

Whilst our conversations with health and social care professionals went well after getting excellent advice from the Admiral Nurses, beforehand it was nothing short of drawn out and frustrating. Services seemed to be so fragmented, under resourced and underfunded. It felt like we were bashing our heads against a brick wall.

For instance, a social worker turned up to assess Mary’s needs. The answers Mary gave would ascertain if she would be eligible for community care and support. At no stage were the wider needs of the family taken into account and the fact that Mary was living on her own made our own perspectives on her case less relevant in a sense. With Mary’s dementia, she thought that she was absolutely fine – they still however took down her account, which did not match up to the reality that she simply couldn’t manage on her own. She needed support with administering her medication to avoid an accidental overdose, or reminding her to take the medication she needed.

Paulette sits at her desk, smiling at the camera. She sits in front of a computer and has Dementia UK leaflets on her desk, as well as a phone and head set.

An Admiral Nurse on our Helpline

Support from the Admiral Nurse Dementia Helpline

There seemed to be no communication between services, or they just didn’t seem to be listening to us, particularly between the GP and the social care services. We flagged on more than a couple of occasions Mary’s difficulties with hearing, but services would still be ringing her.

If not for the advice we had received from the Admiral Nurse Dementia Helpline in helping us navigate through a broken and convoluted care system, I hesitate to think how Mary would have gotten the support she was entitled.

Mary leaving her door open was of particular concern. The Admiral Nurse Dementia Helpline let us know how to contact the local Safeguarding team if we felt that she was at risk of harm in any way. The Admiral Nurse on the line also gave us an in-depth account of the role of the Safeguarding team.

We discussed the benefits of regular care visits for Mary’s particular situation and they were able to provide information on local care agencies and how some community health services have rapid response teams for up to six weeks to prevent an admission to hospital.

In addition to this, they provided us with some really helpful information around Lasting Powers of Attorney (LPA). The Admiral Nurses explained to us that we may wish to invoke these powers, whenever appropriate, so that we could be sure that Mary would be supported in her complex needs.

“One size fits all” system

The system overall though appears to be a “one size fits all” and this is most definitely not the case. After our experiences, I can understand how difficult it can be for families to understand the remit of the disparate health and social care systems.

Now we are back at home, we can see the challenges in the UK system more clearly. The current system does not take into account how every diagnosis of dementia affects families differently. The LPA definitely gives us a more proactive financial, legal and practical role in Mary’s life and welfare. However, we still feel that we remain shut out from allowing Mary to get the care she needs.

Paying for the cost of care

In terms of where Mary is now, Graham made the decision that he didn’t want her to be cared for in the community. Mary did not know how to operate appliances which could have posed a real fire risk. This resulted in the sale of her flat so we could pay for the cost of her care home. The sale of Mary’s flat to pay for the cost of care made us feel bad as she had been living here for 30 years. All the other options just seemed to be equally as expensive, including renting out her flat, or a full-time live-in carer for Mary.

We believe a multidisciplinary approach is needed. This would then provide for the continued safety, wellbeing and welfare of people like Mary. After our excellent interaction with the Admiral Nurses, we understand how they can help navigate the health and social care systems, providing advice and support on where families need to go.

*Please note that names have been changed to protect anonymity.

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