On the BBC Headroom site, there is a section all about alzheimer’s disease. It is from here you can watch again Terry Pratchett’s documentary ‘Living With Alzheimer’s'- but there are also a number of other short videas made by different people, ordinary people, about alzheimer’s in their lives. It’s really interesting that many of the people being interviewed actually have the disease (is diagnosis getting better/earlier?) as most of my work is with people in the later stages, and therefore they do not communicate a great deal, let alone about themselves or their condition.
There is a disturbing message from many of those with dementia that somehow they will become less themselves, lose their humanity, or as one woman put it become ‘just a shell’.
I don’t know how I feel about this. I see the pain caused watching a loved-one increasingly struggle with daily tasks, and experience non-recognition, or unpleasant, or even violent behaviour from that loved-one. However, Alzheimer’s should not result in the slipping away of someone’s humanity. Just as disability campaigners argued against a medical model of disability, it is absolutely crucial that communities ensure an individual’s sense of personhood. Speaking to a carer at a residential dementia home, she expressed how she felt she knew a resident, even when they were very late stage dementia. There is more to our personalities than what we think, do or say. It’s our humanity talking.
Research released today by the Alzheimer’s Research Trust suggests that staying active later in life may delay the onset of dementia. In an interview with the BBC World Service, Rebecca Wood of the Alzheimer’s Research Trust stressed the importance of “keeping minds active and bodies active and keeping those social networks going”.
An interesting report from Channel 4 News showing the growing recognition of the importance of using arts as part of the treatment of dementia – and momentum too as the government pledges £150million to improve dementia care.
This afternoon I had my first taste of my new volunteer placement. I am volunteering to bring live music to the residents (and to the carers) of an alzheimers home. As I waited for the other volunteers to arrive, a resident was invited to play the keyboard – and she played, falteringly, ‘There is a Green Hill Far Away’. As the other volunteers arrived, she went back to her chair, and I started playing the tune she had played on my violin – just the start, and she joined in. It felt important to affirm this song back to her, as, for some reason it had stayed with her, despite her dementia.
The session lasted half an hour, and was a rattle through some old music hall favourites, as well as ‘What Shall We Do With the Drunken Sailor’ which got one of the residents dancing. It was wonderful to see such a high staff:patient ratio, and to see the carers singing to their clients, holding their hands, and connecting with them.
This was a fabulous conference run by Do The Right Thing, way back in October. I love the fact that I can justify attending a conference for my professional development that teaches how to make aromatherapy bath salts
Seriously, what really attracted me to the conference was the number of music workshops that were taking place. Unfortunately I could only get to 2 of them, but it is so encouraging to see the growth of music as a tool being used in social care and mental healthcare.
One fantastic organisation down in London is SoundMinds who use music as a method of community occupational therapy – they even have their own agency.
The highlight for me was Liz McNaughton‘s session Voicework for Wellbeing. Aside from voice and singing teaching, Liz also works with groups of people coping with degenerative diseases such as alzheimers and dementia, parkinsons and MS. She works completely unaccompanied, without percussion, and no songsheets (the simplicity of this appeals to me immensely) and she focuses entirely on the voice, whether singing or speaking.
On 28th October I joined a Singing for the Brain session supported by the Alzheimers Society. It was a cold, rainy day, but despite this there was a good number of people there – 20 in total with 9 clients and 11 carers/musicians/volunteers. The session began with tea and cake and as people arrived they were given name labels.
An opening song welcomed everybody and affirmed each person by name – always an important aspect of building relationships within a group. An interesting action to this song was to pass around a long ribbon which each person held – and then for everyone to raise their arms, guiding people’s hands with the ribbon, if they were unsure or unco-ordinated for any reason, and it was a way of linking each person together.
My criticism of the session was that it perhaps ‘rattled through’ the repertoire a bit too quickly. We really covered a lot of songs and at times I had the feeling that the clients’ voices were being ‘pasted over’. Another aspect which I, and perhaps others, found difficult was the noise level, especially during the songs which included percussion instruments. This may have been because of the acoustics of the room.
A real challenge for people providing participatory music for older people with dementia is being able to guide them through repertoire in a way which allows that person to express themselves and to engage with others around them.
This session was enjoyed by most of the participants present. It also felt like a great way of bringing together carers going through similar situations. One woman I spoke to who was caring for her husband who had had a stroke commented most strongly on the social aspect of the singing group, and the importance of being with other people, which ties in with a school of thought that social relationships are a major determinant on health.