When teaching the Making activity meaningful for people with dementia course I always make the point that meaningful activity is one of the most effective interventions that exist for people living with dementia. That is usually met with bemused smiles, as most people who are charged with creating or facilitating activities for people with dementia are often poorly paid, rarely given any specific training, are often asked to run programmes with very few resources, and are almost never acknowledged for their vital role in supporting wellbeing in people with dementia. To say that we undervalue the benefits of well-designed activities that are used in a person centred, therapeutic manner would be an understatement. To that end let’s take a look at a small slice of the compelling evidence for investing in meaningful activity as a therapeutic intervention.
Activity involvement as a way of minimising loneliness and social isolation
There has been a significant amount of research into the impacts of loneliness and isolation which has broadened our understanding of the importance of keeping people connected to one another. Loneliness has the equivalent impact on our health as smoking 15 cigarettes a day1, is linked to higher levels of depression2, and contributes to faster cognitive decline in people living with dementia3. Meaningful activity in social groups of interest, and one to one engagement, have been found to reduce feelings of loneliness and help maintain networks that reinforce personhood and identity for people living with dementia4.
Personalised activity to reduce distressed behaviours and inappropriate prescribing
When someone living with dementia experiences high levels of stress because of an unmet need this often is communicated through distressed behaviour. This might look like restlessness, agitation, frustration or it might look like apathy or social withdrawal. Historically (and I would argue still) distressed behaviour has been treated from a medical perspective. Rather than identifying the cause of the distress and meeting the unmet need or eliminating the triggers for the distress, the distressed person is prescribed medication. In 2009, Dr. Sube Banergee outlined the stark health consequences to inappropriate prescribing of anti-psychotic medications for distressed behaviour.5 For many non-prescribing practitioners there was, and remains, a lack of understanding about the seriousness of using antipsychotics for people who are not experiencing psychosis. On balance, the health risks to using antipsychotics in this way are very high. His report and many since have made a compelling case for finding and using psycho-social interventions to address distressed behaviour for people living with dementia.
Large scale research projects, such as FITS into Action and WHELD6,7,8, have evidenced the significance of implementing a programme of meaningful activity in efforts to reduce inappropriate anti-psychotic medication used for distressed behaviour in people with dementia. This research often builds on the research work of Jiska Cohen-Mansfield9 and others who have evidenced again and again the effectiveness of psycho-social approaches to reducing distressed behaviour. Using well designed activities are a very effective way of reducing agitation and other distressed behaviour for many people.
The role of activity participation in improving sleep
Being involved in activity also has benefits for sleep. It is not uncommon for circadian rhythms (the biological regulator of our daily activities such as sleeping, elimination, energy levels, etc.) to become disrupted as dementia progresses, which can result poor quality, fragmented sleep or reversed sleeping patterns. Disrupted sleep is one of the most difficult symptoms of dementia for carers, as it impacts on their ability to sleep as well10.
Evidence shows that participation in activities, particularly in the morning and early evening, in addition to direct exposure to sunlight (particularly in the morning), and various relaxation activities can improve sleep quality and regulate circadian rythyms11.
Using activity to maintain or improve physical health
Increasing activity levels and participation in exercise groups like tai chi, chair exercises, dancing, and walking groups can improve overall physical fitness, balance, mobility, flexibility and sleep12,13,14,15.
There are many other benefits to meaningful activity participation: nutritional, social, emotional, creative and expressive. You might be noticing how there is significant overlap: one activity might meet a persons need for social inclusion while simultaneously benefiting their sleep, mobility, balance, and lower their stress levels. Many activities are high impact, promote better physical and mental well-being, while encouraging the continued use of skills. As a person’s dementia advances, sensory activity in particular becomes an effective way staying engaged with their environment and their loved ones.
But like most psychosocial approaches, meaningful activities are not a one size fits all proposition. We must also apply what we can of the persons past interests, and be aware of their strengths in order offer activities which provide the right level of challenge and interest without becoming frustrating. If your organisation supports people with dementia in the community or in a care service the evidence shows it is worth investing in a strong, evidenced based activities programme because there are few interventions which are as effective and as easily personalised as activity involvement.
DSDC offers two courses focused on developing skills for those supporting meaningful activity for people living with dementia: Making activity meaningful for people with dementia, and DSDC’s new course, Enhancing activity engagement and the sensory environment for people with advanced dementia.
1Holt-Lunstad, J., Smith, T. and Layton, J. (2010). Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Medicine, 7(7), p.e1000316.
2Hawkley, LC, Cacioppo, JT. (2010) ‘Loneliness matters: a theoretical and empirical review of consequences and mechanisms’. Annals of Behavioral Medicine, 40 (2), pp. 218–227
3Donovan, N., Wu, Q., Rentz, D., Sperling, R., Marshall, G. and Glymour, M. (2016). Loneliness, depression and cognitive function in older U.S. adults. International Journal of Geriatric Psychiatry, 32(5), pp.564-573.
4 Age UK (2015). Evidence review: Loneliness in later life.
5Banerjee, S., 2009. The use of antipsychotic medication for people with dementia: Time for action.
6Brooker, D.J., Latham, I., Evans, S.C., Jacobson, N., Perry, W., Bray, J., Ballard, C., Fossey, J. and Pickett, J., 2016. FITS into practice: translating research into practice in reducing the use of anti-psychotic medication for people with dementia living in care homes. Aging & mental health, 20(7), pp.709-718.
7Ballard, C., Orrell, M., Sun, Y., Moniz‐Cook, E., Stafford, J., Whitaker, R., Woods, B., Corbett, A., Banerjee, S., Testad, I. and Garrod, L., 2017. Impact of antipsychotic review and non‐pharmacological intervention on health‐related quality of life in people with dementia living in care homes: WHELD—a factorial cluster randomised controlled trial. International journal of geriatric psychiatry, 32(10), pp.1094-1103.
8Garrod, L. and Fossey, J., 2019. The WHELD programme: showing the benefits.
9Cohen-Mansfield, J., 2004. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. Focus, 9(2), pp.361-308.
10Okuda, S., Tetsuka, J., Takahashi, K., Toda, Y., Kubo, T. and Tokita, S., 2019. Association between sleep disturbance in Alzheimer’s disease patients and burden on and health status of their caregivers. Journal of neurology, 266(6), pp.1490-1500.
11Rose, K.M. and Lorenz, R., 2012. Sleep disturbances in dementia: What they are and what to do. Journal of gerontological nursing, 36(5), pp.9-14.
12Lamb, S.E., Sheehan, B., Atherton, N., Nichols, V., Collins, H., Mistry, D., Dosanjh, S., Slowther, A.M., Khan, I., Petrou, S. and Lall, R., 2018. Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial. bmj, 361, p.k1675.
13Nyman, S.R., Ingram, W., Sanders, J., Thomas, P., Thomas, S., Vassallo, M., Raftery, J., Bibi, I. and Barrado-Martín, Y., 2019. Randomised controlled trial of the effect of Tai Chi on postural balance of people with dementia. Clinical Interventions in Aging.
14 Lam, F.M., Huang, M.Z., Liao, L.R., Chung, R.C., Kwok, T.C. and Pang, M.Y., 2018. Physical exercise improves strength, balance, mobility, and endurance in people with cognitive impairment and dementia: a systematic review. Journal of physiotherapy, 64(1), pp.4-15.
15Richards KC, Sullivan SC, Phillips RL, Beck CK, Overton-McCoy AL. The effect of individualized activities on the sleep of nursing home residents who are cognitively impaired: a pilot study. J Gerontol Nurs. 2001;27:30–7.