In the UK, about two-thirds of people with dementia live at home. They hope to remain involved in daily, meaningful activities, enjoy good family relationships, and generally “just get on with life”. Many people with dementia have family members keen to support them in achieving this. It is the wish and hope of everyone to live better with dementia at home for as long as possible. Being involved in what has been coined “rehabilitation therapy” helps do this.
The only problem is that a new diagnosis of dementia can bring feelings of loss to everyone at home. For example, on a day-to-day basis, it can result in a loss of involvement in previously enjoyed activities. This can lead to losing roles previously held in the family and society. It can often lead to feelings of “holding on” to maintain relationships.
However, there is often little change in ability from one day to the next – pre-diagnosis to diagnosis. Often, people with dementia can still lead meaningful and active lives for many years after diagnosis. Yet, when someone is diagnosed with dementia, a considerable emphasis is placed on what they can’t do. We often forget what they can still do. There is often little focus on maintaining and building upon remaining skills.
Some questions you may well ask are:
- How can normality at home be sustained when dealing with a degenerative brain disease?
- How can I support a family member with dementia to keep active and maintain skills?
- Will this not change over time as symptoms progress?
In this article, we look at some of the research into rehabilitation therapy. We look at what we can do to support people with dementia to remain active and involved.
What is rehabilitation therapy?
The World Health Organisation describes rehabilitation as
“a set of interventions designed to optimize functioning and reduce disability”.
Put simply; rehabilitation therapy helps people to remain as independent as possible. This requires involvement in everyday activities and places a huge emphasis on encouraging involvement in meaningful activities.
Engaging in activities that are meaningful fills all of us with a sense of purpose and well-being. This doesn’t change when a person is diagnosed with dementia. Meaningful activities engage the person’s attention and connect with their interests. There are many activities that a person with dementia can engage in. This can be at home, day centre, or in social groups.
In 2018, the World Health Organisation launched the campaign “Rehabilitation 2030 – call to action” The report describes rehabilitation as:
“An essential part of the continuum of care, along with prevention,
promotion, treatment, and palliation, and should therefore be considered
an essential component of integrated health services”.
The campaign emphasises that rehabilitation should be offered for all conditions.
Reports confirm that today, however, people with dementia are not routinely offered rehabilitation therapy. That said, organisations such as Alzheimer’s Society support research into cognitive rehabilitation therapy. This type of therapy makes managing meaningful everyday activities easier for people with dementia.
A recent study by Oxford University, although supporting the proposal to provide formal rehabilitation therapy for people with dementia, also found that there is little available.
The authors of the study gave several possible reasons for this:
- Some see it as having limited utility due to the progressive nature of dementia.
- Lack of training in rehabilitation in dementia care
- Fear that it may lead to ‘false hope’
What People with Dementia Say!
Many people with dementia prove these statements to be hugely incorrect. In many cases, people with dementia are capable of accepting their diagnosis. They put steps in place to adapt and live well with the condition for as long as possible.
In 2019, Age Scotland produced this report on the topic. Here are some comments from people living with dementia in Scotland:
Preserving Cognitive Function
As a chronic progressive disease, Alzheimer’s disease and other forms of dementia require more than just medications to preserve cognitive function.
Look at this wonderful video by Dr. Jennifer Bute, who was diagnosed with dementia at 63. Here, Dr. Bute talks about her desire to live a fulfilling life. She describes some of the measures she is putting in place to help achieve this.
There are plenty of examples of people, after a diagnosis of dementia, doing whatever is necessary to continue engaging in life. Examples include Australian author, speaker, and activist on all things dementia, Kate Swaffer. Kate was diagnosed with frontotemporal dementia aged 49 in 2008. You can listen to Kate’s frank and inspirational views on receiving a diagnosis of dementia here.
The Scottish Dementia Working Group is led by people with dementia who campaign tirelessly to raise awareness about the condition. Their work is meaningful to them and those living with dementia in Scotland. Wendy Mitchell, a high-profile blogger, author, and speaker, was diagnosed in 2014 aged 58. She has inspired thousands. Wendy is determined to show others the “substantial contribution” that people with dementia can continue to make. You can read more about Wendy’s life after a diagnosis of dementia here.
Definition of ‘Meaningful Activity’
The National Institute for Health and Care Excellence (UK) defines Meaningful Activity as:
‘including any physical, social, and leisure activities tailored to the person’s needs and preferences.
Activity can range from activities of daily living such as dressing, eating, and washing to leisure activities such as reading, gardening, arts and crafts, conversation, and singing.
It can be structured or spontaneous for groups or individuals and may involve family, friends, carers, or the wider community.
Activity may provide emotional, creative, intellectual, and spiritual stimulation.
It should take place in an environment appropriate to the person’s needs and preferences. This can include using outdoor spaces or making adaptations to the person’s environment.’
What can we do at home to support family members to remain active?
Their recent video, ‘Innovations in Dementia’, describes cognitive rehabilitation as:
“Helping people with dementia to keep doing the things they love.”
This is achievable at home by supporting family members to keep doing activities that are meaningful to them. Some examples of this include dressing, washing, or gardening. It can be through a structured approach or spontaneous, providing any form of stimulation, whether emotional, creative, intellectual, or spiritual. It can be outdoors or indoors.
Knowing a family member at home means we are best placed to come up with ideas that are meaningful things your loved one likes to do. This can relate to their strengths. In our article, “Using creative arts to help people with dementia”, we discuss different forms of arts-based interventions that can help people with dementia stay active and involved. However, involvement in meaningful activities is more than this.
Practical ways to support family members at home
It can be activities that remind people of a previous profession or a hobby they enjoyed. It can include involvement in everyday tasks such as setting the table, cleaning up after a meal, sharing stories, helping in the garden, hoovering, and helping to prepare a meal.
Everyone with dementia is unique. Each person will engage in activities in their way. Below, I share my own experience caring for my mother at home.
Here are eight different sets of activities, themed around what the person may find meaningful, based on what they enjoyed doing throughout their life.
What are the benefits of involvement?
A whole host of benefits exist in supporting family members with dementia to continue to be involved.
- Eradicates Excess Disability: Many people with dementia experience “excess disability” whereby the degree of functional impairment is greater than that which can be explained by neurological deficits alone. In other words, loss of ability is caused by something other than the disease. Keeping your loved one involved and active can help keep this at bay, ensuring skills are maintained and built upon for as long as possible.
- Provides Mental Stimulation: Participating in activities that engage the brain is suitable for all of us, and more so for people with dementia. Research has shown that structured activity programmes may delay the progression of Alzheimer’s disease.
- Improves physical and general health: Physical activity offers benefits to overall health. Improvements in cognitive functioning have also been connected to physical exercise.
- Involves Social Interaction: Carrying out activities together helps us stay together. It wards off feelings of loneliness. This is true for all of us.
- Improves Sleep Habits: Keeping busy during the day and being involved in activities can help improve sleep at night. It reduces the time a person may doze off during the day and helps ensure they are ready for a good night’s sleep come bedtime.
- Improves feelings of Self-Esteem: Being involved in activities can improve self-esteem. It can offer feelings of purpose and fulfillment, no matter how small the activity. It helps the person remember who they are, giving a sense of identity, connecting with others and what is important to them.
- Strengthens feelings of togetherness: It strengthens feelings of connection and belonging, especially when carrying out an activity with another family member or friend.
Thank you for reading.
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Please also check out our other articles on self-care for family carers and therapeutic interventions for people with dementia.