Category Archives: Leisure activities

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Bringing back memories to allow people to live better with dementia

There’s been a lot of snobbery about some therapies to improve wellbeing in dementia. This snobbery I think comes in part from the idea held by some, particularly non-molecular biologists, that just because it doesn’t involve a PCR gel or test tubes, research can’t be any good.

But I’ve never been failed to be struck about how actual persons with dementia have clearly been described substantial benefit in their quality of life, with not a Big Pharma product in site.

In a  2009 study from the University of California, the human brain was imaged while people listened to music. That study found specific brain regions linked to autobiographical memories and emotions are activated by familiar music. The UC Davis study titled, “The Neural Architecture of Music-Evoked Autobiographical Memories,” was published in the journal Cerebral Cortex. That particular finding may help to explain why music can elicit strong responses from people with Alzheimer’s disease. The distributed neuronal network that the music activated is located in the medial prefrontal cortex region—right behind the forehead—and happens to be one of the last areas of the brain to atrophy over the course of Alzheimer’s disease.

 In a 2011 study, on a completely different continent, Finnish researchers used a groundbreaking method that allowed them to study how the brain processes different aspects of music, such as rhythm, tonality and timbre (sound colour) in a realistic listening situation. Their study was published in the journal NeuroImage. The researchers discovered that listening to music activates wide networks in the brain, including areas responsible for motor actions, emotions, and creativity. Their method of mapping revealed complex dynamics of brain networks and the way music affects us. For this study participants were scanned with functional Magnetic Resonance Imaging (fMRI) while listening to a stimulus with a rich musical structure, a modern Argentinian tango.

Taken together, these findings suggest as if familiar music serves as a soundtrack for a mental movie that starts playing in our head. It calls back memories of a particular person or place, and you might all of a sudden see that person’s face in your mind’s eye. This might explain the phenomenon that some carers have noticed – that some people with dementia can start smiling when they hear a piece of music of particular significance to him or her.

And indeed the issue about how music can bring back memories is certainly alive and well.

See, for example, this recent tweet:

Extract

Harry O’Donnell, a former Clyde welder and waterpolo player, has a type of dementia known as “vascular dementia”. After a period of illness, Harry and his wife Margaret were struggling to connect with each other. “Playlist for Life” worked with them both to identify a playlist that would evoke memories from Harry’s life. Margaret began sharing it with him on an iPod at every visit.

“Playlist for Life” encourages families and caregivers to create for their loved one – at home or in residential care – a playlist of uniquely meaningful music delivered on an iPod whenever needed.

(The original source of this video is here).

There is accumulating evidence that if people with dementia are offered frequent access to the music in which their past experience and memories are embedded, it can improve their present mood, their awareness, their ability to understand and think and their sense of identity and independence. This strikingly is no matter how far their dementia has progressed. It might be also that music that is merely familiar in a general way, although pleasurable, is not likely to be so effective.

This is an example of a wider body of work known as “reminiscence therapy”. Reminiscence therapy stimulates memory and conversation through the use of prompts –images, sounds, textures, tastes, and objects that spark the senses. Research shows that it can improves mood and quality of life. Reminiscence therapy typically uses prompts, such as photos, music or familiar items from the past, to encourage the person to talk about earlier memories.  Since the late 1990s, partially controlled studies have shown that this treatment has a small but significant positive effect on mood, self-care, the ability to communicate and well-being. In some cases, this therapy improves intellectual functioning.

Steve Rotheram MP referred to “The House of Memories” in the parliamentary debate on dementia care and services in Parliament this Tuesday:

“I thank the Minister for giving way. He is absolutely right about the individual care package that somebody who, unfortunately, has dementia or Alzheimer’s gets. Thankfully, long gone are the days when somebody was given a couple of tablets in the hope that that might somehow affect their condition. Is he aware of the House of Memories project in Liverpool? Is he also aware that there is an event that I am hosting here on 17 June that Members of this House are welcome to attend?”

The “House of Memories” programme demonstrates how a museum (or by association a library, arts centre, or theatre) can provide the health and social care sector with practical skills and knowledge to facilitate access to an untapped cultural resources; often within their locality. It is centered on the fantastic objects, archives and stories at the Museum of Liverpool and is delivered in partnership with a training provider, AFTA Thought. The programme provides social care staff, in domicile and residential settings, with the skills and resources they need to inform their practice and support people living with dementia.

This powerful initiative aims to raise awareness of the condition, and enable participating professional health services, carers and families to help those directly affected to live well with dementia.  Indeed “House of Memories” has had a profound impact in relation to the ‘culture of care’ across the three regions, which can be directly attributed to the strong empathic qualities and personal resonance inherent in the programme’s content, design and delivery. The evaluation has revealed a demonstrable shift in participants’ cognitive and emotional understanding of dementia and its implications for those directly affected and carers alike.

Their training programme is designed to be easy to use and informative, acknowledging the central role the carer can play. They can help unlock the memory that is waiting to be shared, and provide a stimulating and rewarding experience for the person living with dementia. The programme provides participants (care workers, dementia champions, home care workers, agency support workers) with a variety of accessible practical experiences to introduce basic knowledge about the various forms of dementia, and to introduce memory activity resources linked to the museum experience, which can also be used within care settings.

To extend the learning beyond the initial training experience, participants are also equipped with resources to take back into settings. These include a ‘memory box’, a ‘suitcase of memories’, and a ‘memory toolkit’.

The power of memories in general life is undeniable. “Nothing is ever really lost to us as long as we remember it”, as L.M. Montgomery said in “The Story Girl”.

Thanks to @TommyNTour [Thomas Whitelaw] for sharing “Playlist for life”.

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I'm not suffering with dementia, I'm living, it's not the end, but the beginning.

Thanks to Sally Goldsmith (@salthepoet) from the Joseph Rowntree Foundation (@jrf_uk) for sharing on her YouTube channel.

Commissioned by the Joseph Rowntree Foundation, this song was performed by older people at their ‘A Better Life’ event in December 2013.

It was made from the real words of Agnes Houston of the Scottish Dementia Working Group.

Sung by Plaxton Court choir, Scarborough and Osbaldwick Community Choir, York the solo by Jean Crabb from Hartrigg Oaks, York, it was written by Sally Goldsmith and arranged and musically directed by Val Regan.

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Activities and networks

One of the most challenging aspects of providing care for someone with a dementing illness is to develop daily routines and activities that are interesting, meaningful, do-able, and valued by the person with the disease. Making sure there is a mix of activities to meet social, physical, mental, and spiritual needs for each individual is a complex and ever-changing task. Also, social networks are becoming increasingly online, and this is an important consideration for care. According to Shirley Ayres in her excellent “provocation paper” for the Nominet Trust (2013), social networks can be widened and enhanced by web-based tools and technology. The growth of online personal support networks strengthens the informal networks that already exist within communities. This paper has turned out to be a seminal contribution.

Studies related to older people with (or without) dementia have not been able to reach a consensus on the types and intensity of the exercise, nor the frequency and duration of the intervention to be most effective and efficient (Thorn and Clare, 2011). Heyn and colleagues carried out meta-analysis of exercise in dementia and reported data on thirty trials of exercise (Heyn et al., 2004). The authors reported on trials that included strength, cardiovascular or flexibility regimes; and analysed for functional, cognitive or behavioural outcomes. A significant positive effect of exercise on behavioural outcomes was reported. However these trials do not provide a full picture of the effectiveness of exercise on BPSD for a number of reasons. There was considerable heterogeneity in terms of the interventions, and exercise was often combined with other behavioural interventions. Thus, it is difficult to isolate the impact that exercise has had on behavioural outcomes. Some regimes were quite complex and require a high degree of physical fitness that would preclude many older adults with complex physical problems and moderate or profound dementia from performing them. Moreover, they were potentially unsustainable without the support of trained therapists. Finally, the relatively high cost of delivery and specialist input required may prevent the interventions being used more widely. Most trials included in the analysis were relatively small, with only two of the eight studies that reported effects on behaviours having samples in excess of 100 participants.

Forbes and colleagues (Forbes et al., 2008), on behalf of the Cochrane Collaboration, found that four trials met their inclusion criteria. However, only two trials were included in the analyses because the required data from the other two trials were not made available. Only one meta-analysis was conducted. The results from this review suggest that there is insufficient evidence of the effectiveness of physical activity programs in managing or improving cognition, function, behaviour, depression, and mortality in people with dementia. Few trials have examined these important outcomes. In addition, family caregiver outcomes and use of health care services were not reported in any of the included trials.

Some earlier studies had suggested that physical exercise may be beneficial in dementia. Physical activity and regular exercise training may slow down cognitive decline (Kramer et al., 2006), and it has positive effects on cognition among those with cognitive decline (Heyn et al., 2004). Physical exercise appears to alleviate depression and reduces behavioural symptoms in dementia patients (Teri et al., 2003).

physical activity

“Social activity” – specifically activities that can broadly be seen as participation in society and between the generations – has been an important thrust of dementia wellbeing policy for some time. The World Health Organization (WHO, 2002) has defined active ageing as having not only physical and psychological dimensions but also as the capacity to participate in society. Social and cultural activities have also been shown to be beneficial in terms of wellbeing, functioning and survival (Glass et al., 1999). What is clear is that successful ageing and wellbeing in dementia involve a complex interplay between personal and social factors – however a common feature is “activity”, whether that is physical, cognitive or social.

A positive effect of physical activities on survival has long been recognised (Paffenberger et al., 1993); more recently, a similar effect was also reported for social and productive activities (Glass et al., 1999). Social disengagement has been suggested as a possible risk factor for cognitive decline in elderly persons (Bassuk et al.,1999). In a Swedish community-based study, the “Kungsholmen Project”, a rich social network showed a protective effect against dementia (Fratiglioni et al., 2000).

Some things to read

Ayres, S. for the Nominet Trust (2013) Can online innovations enhance social care? http://www.nominettrust.org.uk/sites/default/files/Enhancing%20social%20care_PP_0113.pdf

Bassuk, S.S., Glass, T.A., and Berkman, L.F. (1989) Social disengagement and incident cognitive decline in community-dwelling elderly persons, Ann Intern Med, 131, pp.165–73.

Fratiglioni, L, Wang, H.X., Ericsson, K., Maytan, M., and Winblad, B. (2000) The influence of social network on the occurrence of dementia: a community-based longitudinal study, Lancet, 355, pp. 1315–19.

Glass, T.A., de Leon, C.M., Marottoli, R.A., and Berkman, L.F. (1999) Population-based study of social and productive activities as predictors of survival amongst elderly Americans, BMJ, 319, pp. 478-83.

Heyn P, Abreu BC, and Ottenbacher KJ. (2004) The effects of exercise training on elderly persons with cognitive impairment and dementia: a meta-analysis, Arch Phys Med Rehabil, 85, pp. 1694-1704.

Kramer, A.F., Erickson, K.I., and Colcombe, S.J. (2006) Exercise, cognition, and aging brain, J Appl Physiol, 101:1237-1242.

Paffenbarger, R.S. Jr., Hyde, R.T., Wing, A.L., Lee, I.M., Jung, D.L., and Kampert, J.B. (1993) The association of changes in physical-activity level and other lifestyle characteristics with mortality among men, N Engl J Med, 328, pp. 538–45.

Teri, L., Gibbons, L.E., McCurry, S.M., Logsdon, R.G., Buchner, D.M., Barlow, W.E., Kukull, W.A., LaCroix, A.Z., McCormick, W., and Larson, E.B. (2003) Exercise plus behavioural management in patients with Alzheimer disease: A randomized controlled trial, JAMA, 290, pp. 20015-2022.

Thom JM, and Clare L. (2011) Rationale for combined exercise and cognition-focused interventions to improve functional independence in people with dementia, Gerontology, 57, pp. 265-275.

WHO (World Health Organization) (2002) Active Ageing: A Policy Framework. Geneva: WHO.

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