If you are a younger person who is still in active employment it can mean the end of that way of life, regardless of whether you wish to continue working in some capacity or not. For someone like my father, diagnosed much later in life after a crisis point, it can mean the end of living independently and an unavoidable move into a care home.
In both scenarios, loss of independence, purpose and the chance to achieve something every day can be devastating. If someone is able to remain involved in engaging, stimulating and worthwhile work, it can have a very positive therapeutic effect that will help to alleviate their dementia symptoms . The minute someone feels condemned to being no longer useful, and potentially just sits in front of a television all day, hardly moving, not needing to process information or problem solve, more rapid and extensive brain deterioration is highly likely. Daytime TV isn’t considered to be mind-numbing for no reason!
Likewise, being forced through your current symptoms to move into a care home, leaving behind the familiarity of your own home, your comforts and most of your possessions can again often bring about a significant deterioration. In my father’s case, his care home never offered him the chance to do meaningful and worthwhile tasks that could have improved his experience of care in those early years. Even something as simple as gardening could have made a world of difference to his quality of life and sense of achievement.
You could argue that an element of personal responsibility comes into play when looking at your own quality of life, but in the case of someone with dementia, the way in which the disease robs a person of that previously assumed ability to control their life complicates issues of personal responsibility immensely. In an ideal world we motivate ourselves and seek out opportunities, but that is often easier said than done when living with dementia means that doors are slammed in your face.
Unlike the support given to many disabled people, people with dementia do not routinely get offered help to enable them to remain in active employment for longer, or in some cases, even remain in their own home for longer. Yet we know that people with dementia do still want to achieve in everyday life, and most would much rather live in their own home than in a communal establishment.
Retaining independence is something most people guard fiercely. More often than not in the earlier stages of the disease, it isn’t the dementia itself that will rob someone of that independence, it is often the attitudes of society and the care and support systems we have (or don’t have!) that manage to do that.
For example, if employment becomes too problematic, or indeed someone is already retired, access to voluntary work can become a lifeline. For however long someone is able to do something, even if their support needs increase, they should be enabled to do that. Assistive technology, support workers or mentoring, memory triggers, flexibility and careful planning of each day can all help in supporting someone with dementia to continue to achieve and contribute to society.
Many of the things needed to enable someone to remain actively engaged in some form of work can also help to keep them living in their own home for longer too. Again the key here is support. Holistic family support is vital where a family are the main care providers, and where someone lives alone, a support package that focuses on keeping them as independent and safe as possible must be active and constantly reviewed.
It can be a very difficult juggling act, not least because much of the support that people with dementia and their families need relies on health and social care working together, which as we all know isn’t the norm. Often people find themselves at a crisis point, whereby either a carer can no longer cope or the person needing care has deteriorated to a point where they are admitted to hospital. If they cannot return to their own home for whatever reason, it is then vital that they have the chance to move into a care home that will support them as much as possible in a partnership of doing things WITH them, not just FOR them.
I want care providers to embrace seeing the people who come to live within their community as participants in the daily running of that community, not just as someone there to receive a service. What achievement means in practical terms for each resident in a care home can vary immensely, but here are some classic examples:
- Allowing a previously dedicated housewife to become actively involved in household tasks like folding washing, dusting or polishing cutlery.
- Helping an avid cook to make simple meals.
- Assisting the perfect hostess to serve tea and cakes to her guests or fellow residents.
- Providing a gardener with a piece of land, tools and plants to grow favourite food or flowers.
- Offering a retired secretary the chance to help with stuffing mailshots into envelopes or putting stamps onto letters.
- Helping a retired postman to distribute the mail around the home.
- Giving an animal lover pet grooming tasks.
- Offering a music or drama performer the chance to entertain everyone.
Until next time...
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