Dementia Action Week: “I had a mum, a friend and now I have a child”

As part of Dementia Action Week, 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 Trust’s Bassetlaw Community Mental Health Team (Mental Health Services for Older People) she would not have been able to cope. 

The life of a Community Dietitian

Dietitian’s Week is 3 – 7 June, we’re taking this opportunity to celebrate our community dietitians, and to highlight some of the great and varied work that many people are not aware is supported by them.  

With GPs potentially seeing a considerable amount of people with conditions relating to diet and lifestyle, dietitians play a key role in making nutritional information accessible and practical as well as supporting a range of conditions.

There are nine Community Dietitians, as well as the support team, that work across two bases, Mansfield and Stapleford.  Cindy Woolley, gives us a flavour of life as a community dietitian in the Trust.

Helping people with learning disabilities

Our Occupational Therapy Learning Disabilities Team support adults with Intellectual and Developmental Disabilities (IDD) to live their lives their way.

For Learning Disability Week, from 18-24 June, some of the team have shared what they love most about their work.

“Thinking differently about difficulties and feeling understood”

Our Let’s Talk – Wellbeing service is helping to reduce anxiety and depression in patients diagnosed with dementia. Read about Andrew’s experience here.

As well as the service featured in our blog post from David, Let’s Talk – Wellbeing also offers support to people in Broxtowe with respiratory, cardiac, memory problems and those at risk of admission to hospital as part of its main service. 

The service uses talking therapies to reduce the emotional distress caused by a person’s physical ill health, whilst helping them to better cope with their condition and manage symptoms. 

Here Richard Alvey, Cognitive Behavioural Therapist, shares the experience of a recent patient Andrew (real name changed):

“Andrew started to become depressed following a diagnosis of dementia. He started to feel anxious in social situations in case his memory would let him down. He felt less motivated to do things and this concerned him as it was out of character.

Thinking differently about dementia

Robin Williams’ widow revealed last week that the actor was developing a type of dementia before he died. Much of the media coverage has focussed on the despair which often surrounds the disease. Tom Dening, Professor of Dementia Research, spoke to us about thinking differently about dementia.

Developing dementia is dreaded more than any other medical condition, at least by people of middle age and upwards. People often say that they would rather be dead than live like that. Last week the media featured the story of Robin Williams, who was developing dementia with Lewy bodies and took his own life the week before he was due to be admitted for further medical investigations. Given that one in three of us is likely to develop dementia before we die, this is sobering stuff.

In fact, most people with dementia die of natural causes, most of them well into old age. We do know that there is an increased risk of suicide or self-harm around the time of diagnosis. Although the commonest early symptom of dementia is memory loss, there are other changes, including in mood and perceptions, and before the person receives a diagnosis these can be worrying or even frightening as the person and their family may not understand what is happening.

The commonest cause of dementia is Alzheimer’s disease and it tends to present with memory problems and difficulty with language, for example finding the right words for things. Other forms of dementia affect the brain differently and may cause other problems. Dementia with Lewy bodies (often known as DLB) is an example. DLB is a bit like having a mixture of Alzheimer’s disease and Parkinson’s disease, so as well as memory problems there are also difficulties with movement, gait and balance. As well as this, DLB has other distinct features of its own. It has a tendency to fluctuate so that at times a person can be quite confused and then shortly afterwards lucid. People often experience visual hallucinations, for example seeing other people in the room, but they also have other problems perceiving where objects are in space. If you combine all of these features, they can be quite bewildering – especially if you don’t have a diagnosis. In which case, you are just likely to think that you are going stir crazy.

However, dementia is not alone among medical conditions in having no cure, so simply to counsel despair is not good enough. What can we do to help?

First of all, we need to reduce stigma around dementia and encourage everyone to talk about it. Second, we need to encourage people to seek help if they are worried. People who are hiding their symptoms are at far more risk than those who seek help. Then we need to make a proper diagnosis, doing whatever tests and investigations are needed to make this as clear as possible. We then have to give people a good explanation as to why they are having the experiences that they do (e.g. you have difficulty in finding words not because you are stupid but because this part of your brain is not working properly). They need time to absorb the information and to ask questions, as do their families.

Beyond this, we need to discuss how dementia is more like a disability than an illness – like, say, arthritis, it doesn’t get worse from day to day but only very slowly. Most of the time, a person with dementia feels well and feels like their normal self. They can enjoy things, and look forward to pleasurable events, even if they may need reminding. They can be transfixed by emotional or artistic experiences. They can still contribute to their role as a parent or grandparent and as a source of family history. We need to hang on to all of this and celebrate it.

Difficult though it often is, we need to walk alongside people on the road of dementia, holding hands when needed and learning from their experiences as well as offering our support. By this approach we can prevent many people from feeling lonely, isolated and desperate with their condition.

If you’ve been affected by the issues in this blog and would like to speak to someone, call Samaritans on 116 123 (UK).

How can doll therapy help someone with dementia?

Most of us know someone affected by dementia. According to the Alzheimer’s Society, there are around 800,000 people in the UK with the condition and this number will rise to an estimated 1 million by 2021.

Although doll therapy is mostly used in care homes, there’s no reason it can’t also be introduced by a relative or friend caring for someone with dementia at home. Research suggests that caring for a doll can help to improve the wellbeing of someone with the condition and encourage changes in behaviour, helping to reduce aggression and agitation.

Here, we take a ‘beginners’ look at doll therapy. If you’re thinking of trying it, we’d suggest doing your own research too. We’ve listed some useful articles further in this post to help get you started.

First things first; doll therapy isn’t for everyone. And there isn’t a ‘one size fits all’ approach to using it. If you’re caring for someone with dementia, you’ll best understand their needs. If you decide to try doll therapy, introduce it slowly. Don’t force it.

There’s a lot published already about the benefits of doll therapy. For the person with dementia, looking after the doll can give them a role, a sense of purpose; it can fulfil a need to care, to give and receive love. It may also help stimulate happy memories. All of this can increase self-esteem and provide comfort during anxiety. For the carer, it helps to start a conversation; you can talk about the doll and carry out activities together, such as bathing the doll, washing or folding its clothes. It introduces a common bond between you and the person you’re caring for.

If you’re considering using doll therapy, you’re probably wondering what sort of doll to get. Really, this depends on who you’re caring for; you might need to try a few different ones before you get it right. The Alzheimer’s Society has a useful online post, written by caregivers, about the different types of doll to choose from. Regardless of which doll you choose, you should have a small selection of clean clothes and blankets. And you may also want to consider getting a moses basket, for when the doll isn’t being used.

As with most therapies, doll therapy isn’t without its criticisms and there’s a notable lack of research about its long term use. Care homes have reported residents arguing over dolls and the person with dementia may put the doll’s needs before their own, not sleeping or eating because they’re busy looking after it. Another criticism is that it infantilises the person with dementia, encouraging them to behave like a child and failing to treat them with respect and dignity. However others argue that, when the person with dementia has chosen to care for a doll, it’s the family that experience the indignity rather than the person with dementia. It’s a complex debate.

If you’re thinking about trying doll therapy, it may be helpful to talk with others who know the person you’re caring for; relatives, friends, health professionals. Should you decide to give doll therapy a try, introduce the doll gradually and look for signs of wellbeing – smiling, laughing, talking, reduced anxiety – but be aware of signs of distress too.

We’d also recommend doing your own research too. Here are some useful articles to get you started:

My Story: Using Doll Therapy to Engage (Alzheimer’s Society)
Written by a caregiver about her experience of using doll therapy with her Mum.

Doll Therapy in Dementia (National Institute for Health Care Excellence)
Various studies about the use and impact of doll therapy

Care homes use ‘doll therapy’ for residents with dementia (The Guardian)
An article published in 2013, looking at how the therapy is used in care homes.

If you’d like to talk about dementia more generally, contact the Alzheimer’s Society.