‘Carers should work with the person’s personality’

HildaHilda Hayo is a Chief Admiral Nurse and CEO of the charity, Dementia UK which exists to provide advice to help families cope with dementia. Hilda talks to Christina MacDonald about how the charity can help and how to get support when the person with dementia has been diagnosed, plus why a befriending service is a good idea.

What services do you provide for people affected by dementia?
We have Admiral Nurses across the country and currently have 164. Thankfully this number is growing week-by-week. We’ve also got Admiral Nursing Direct, our national helpline staffed by Admiral Nurses.

There are other helplines out there but the distinction is that yours is staffed by Admiral Nurses.
Only Admiral Nurses. Admiral Nurses who have gained experience, knowledge and skills over a number of years before they work on the helpline.

What kind of training do they have in dementia?
When we recruit Admiral Nurses, we’re recruiting a registered nurse who has extensive experience of working with people with dementia. When we take an Admiral Nurse on, they will then work in their clinical area usually within the community but in addition some nurses work in care homes, acute hospitals and hospice settings. The nurses who work on the helpline have been working as Admiral Nurses for an average 10 years, before they come onto the Admiral Direct helpline. In addition, some of our Admiral Nurses have a personal family experience of dementia.

How do you fund the work you do?
It’s all voluntary donations. We don’t have any government money whatsoever. The majority comes from in memoriams and we also raise money from community events. So, for instance, people run marathons for us, jump out of planes to raise money, swim or take part in other events. So we have lots of different people who have been touched by dementia and they want to fundraise for us. (Visit https://www.dementiauk.org/get-involved/ to see how you can help with fundraising).

Do you have a personal connection to dementia?
Absolutely. My mother-in-law had vascular dementia and my father-in-law unfortunately had brain tumours in the front lobes of his brain that changed his personality remarkably. I also have a small clinical caseload specialising particularly in the under 65 age-group with dementia.

There’s been a significant increase in the number of people going to their GP with memory-related concerns. Do you think this is because dementia is on the public radar more now or is it due to an increase in the number of people being diagnosed?
I think it’s because it’s more on the radar. Three years ago, the diagnosis rate was approximately 40-45 per cent across the country. Some areas are considerably lower than that but now we’re at 67 per cent diagnosis rate. Before the focus on dementia over the last three years people didn’t always come forward to get a diagnosis.

When it comes to getting a diagnosis, I understand that the GP will rule out other possible causes of memory loss and then refer the person on to a Memory Clinic. Is that generally the way it’s done these days?
Generally, yes. There are some GPs that will give the diagnosis without going through Memory Clinics because they have some specialist knowledge and skills but generally the GP will ask questions about physical and psychological health. They will request blood tests, check the blood pressure, and check for infections. In addition, they will ask about sleep and appetite patterns, and ask about any concerns the person may have and if necessary, perform a brief memory test. They’ll check all of these aspects because a lot of people might look like they’ve got early dementia when in reality it’s actually a physical or psychological disorder that can be treated. So all of the checks are completed first to rule out other conditions before the person is referred to a Memory Clinic.

What is a sensible approach for providing help when a person has been diagnosed?
Very frequently, people forget that when a person gets the diagnosis of dementia, they’re still the same person as they were just before that diagnosis came through. Different people have different personalities and what will work for one person won’t necessarily work for another. So work with the person’s personality. Try reasoning. There’s a temptation to try and take over after diagnosis. To think: ‘Oh gosh, I’ve got to plan for the future. I’ve got to put carers in now’ when in reality the person doesn’t even need them at that point. It’s about doing things gradually. The better way of getting some assistance into a person’s life is introducing a person as a befriender of the person with dementia through a befriending scheme. That seems to work more effectively. Arranging for a befriender to come in and take the person to do something they like to do i.e. going to the shops or to say: ‘You know you like to go to the gym, Fred’s going to come along with you’. Those sorts of things are going to work much better than saying: ‘Fred’s going to come into the house and look after you’. Make it more of a social activity.

How can people find befrienders?
Lots of private care agencies will provide a member of staff who could act as a befriender rather than a washing, dressing, making the meals relationship. But in addition to that, you’ve also got volunteers that you can get through a volunteer agency or through Alzheimer’s Society or Age UK. These befrienders are specially selected for the role and are screened to ensure they are dependable and safe. Most people go down the voluntary route but if you’ve got the money to be able to do so, a private care agency or the personal appointment of a befriender gives more flexibility and can fit around the person’s needs.

When a person with dementia can no longer be considered safe at home on their own and is in denial about needing help, how should the family handle the situation?
If you have Lasting Power of Attorney (LPA) and you’ve registered it for Health & Wellbeing and also for Property & Finance, then you can make a decision on the person’s behalf.

If the family doesn’t have LPA, I would first assess the capacity of the individual to see if they have capacity to make the decisions. It is presumed that the person has capacity unless it can be proven otherwise. If there is a safety risk and you still can’t get that person to agree to accept help despite explaining the risks, families could contact their local social services and express their concerns regarding safety. A decision will then be made to make decisions in the best interests of the person with dementia in consultation with the family and any other services that are involved. The decision made could be about care and treatment, where they live and what support they need to enable them to live safely.

More information

For help and advice on coping with dementia, visit the Dementia UK website at https://www.dementiauk.org/ or call the helpline on 0800 888 6678. You can get more advice and support on living with dementia at The Alzheimer’s Show, which takes place on 8-9 June 2018 at London Olympia.