Attention around dementia has focused on medication and support for carers. But social activities are critically important, explains Clarissa Giebel.
Dementia and Alzheimer’s disease has just become recognised by the Office for National Statistics as the number one killer of women in the UK. It is estimated by the Alzheimer’s Society that 850,000 people living in the UK have dementia.
While dementia is most commonly diagnosed among people over 65, it can also affect younger people. Many more people are affected as carers to a loved person with dementia.
With such a vast number of people living with dementia in the UK alone, providing good care is crucial and is one of the top national priorities in the Prime Minister’s Challenge on Dementia.
But what do we mean by ‘care’? It is actually multi-faceted, including physical care, emotional support and helping with everyday activities, such as shopping, managing finances and dressing. But it also involves providing and motivating a person to engage in social activities.
With so many different aspects to care, and with such a large population in need of care, it is unsurprising that there are huge variations in the care provided across the country. There are serious concerns about the sometimes poor quality of care provided to residents of care homes.
The Care Quality Commission (CQC) – the independent regulator of health and social care in England – has looked into the current state of dementia care. The CQC examined 129 care homes and 20 hospitals across England. Dementia care was found to be mostly good, but the CQC reported large variations in dementia care, ranging from very poor to very good care.
In 33% of care homes and 61% of hospitals, the quality of care was variable to poor, with carers and people with dementia having little choice about how residents and patients spend their time. The Glasgow Declaration – signed in October at the annual Alzheimer Europe conference – highlighted the need to respect the rights and autonomy of every person with dementia.
Several dozen people with dementia, with their spouses, were present at the Alzheimer Europe conference. They spoke about their experiences and what changes they believe are required in the care system for people with dementia. An account of one lady diagnosed with early on-set dementia was featured on the BBC.
It is clear – and should be obvious – that focusing on the individual receiving dementia care is critical to making them feel comfortable and well. Every person with dementia is different. Two people with Alzheimer’s disease or vascular dementia may suffer from the same illness, but they will not have the same needs or wishes.
Every single person with dementia requires a different approach to care, ranging from the medication they need, to whether they do or do not need help with dressing or eating. What the CQC report showed was that some people with dementia want to be involved in small household tasks, such as cleaning the table after a meal.
One of the most important aspects of care – which varies substantially from person to person – is social engagement and being active, physically and mentally. Unfortunately, most care homes do not provide sufficient levels or diversity of social activities or entertainment. This may be the result of staff being unaware of the benefits available from social engagement, or that staff resources are inadequate.
Gardening is an example quoted in the CQC report. One lady had enjoyed gardening when she had lived in her own home and, given the option, she would have enjoyed continuing to do this while living in her care home. This would have made her life in the care home much more pleasurable.
A recent study showed that social activities – such as pub quizes, gardening and singing groups – and maintaining an active social life with friends and family can improve the well-being of people with dementia. In addition, these activities reduce the stress that family carers may experience.
When carers were asked directly about which activity – if any – they found most stressful, they typically mentioned mechanical and practical tasks such as dressing and handling finances. But indirect assessment – which considered the association of carer stress with their loved person’s performance of actions and behaviour – revealed the importance of social activities.
This suggests that carers may not feel ready initially, after a recent diagnosis of dementia, to contemplate openly that their loved husband, wife, or mother or father is demonstrating personality changes. Social activities can be occasions when changes in personality occurring through dementia are manifested. These can include in some people more aggressive behaviour, or wandering.
Significantly, family carers said most of those in the early stages of dementia had little motivation to socialise. It is unclear why this is – it could be depression, or a feeling of stigmatisation.
But what is essential is that we ensure that people with dementia, and their carers, enjoy activities together and try to maintain an active social life.