Dementia Action Week, led by Alzheimer’s Society, is running a “Forget Me Not” campaign to raise awareness of dementia. As we reflect on the impact of dementia, we also consider how professionals like those who act as professional deputies can support people living with dementia and their families. We work to help them to maintain their dignity, independence and live the best quality of life possible for their circumstances, keeping the individual at the heart of the decision-making process.
Understanding dementia beyond the diagnosis
Dementia is often spoken about as a single condition. In fact, it is a set of symptoms that can affect not just memory but also problem-solving, decision-making, communication, and emotional regulation. Alzheimer’s disease is the most common form of dementia.
Sadly, the condition is progressive, so whilst symptoms can often be relatively mild at first, they do become worse over time. Individuals may then lose mental capacity to make certain decisions about their property and financial affairs. This is where careful planning and legal safeguards become critical.
The role of the Court of Protection
The Court of Protection was set up to support individuals who lack the mental capacity to make certain decisions for themselves, due to illness or injury. The court has the power to appoint a deputy to manage finances or to make specific orders so that decisions can be made in a person’s best interests and their affairs can be properly managed.
Whilst the legal framework is very important, at the heart of being a professional deputy, the work is deeply personal. Every decision made is about a person, so it is essential to know and understand their history, values, preferences and relationships.
A client story (anonymised)
We were recently appointed to act for an elderly lady who had begun to display symptoms of dementia. She had lived independently for many years and had always been meticulous about managing her finances. However, concerns arose about her ability to manage her day-to-day affairs safely, and it was noted that she had locked herself out of her house, had no food in her home, lost her bank cards and was struggling to access her finances. She was really struggling to manage alone and had no hot water or heating for two months before our appointment, and she even spoke about shillings as if that was the currency used today.
An application was made to the Court of Protection, and a deputy was appointed to oversee her property and financial affairs. At first glance, the role appeared largely administrative: changing her locks, arranging property repairs, accessing bank accounts, paying bills and arranging carers to assist her with daily tasks such as shopping so that she could continue living independently.
We didn’t want to turn our client’s life into a tick-box exercise; we needed to ensure that the support we put in place for her would allow her to retain her sense of identity. She also became suspicious of our involvement in her life as she did not understand why a deputyship was necessary, and she was understandably private about her financial affairs. A live-in carer was arranged, and she found this difficult, particularly because she had lived alone for 35 years after the death of her husband.
Our client had neglected her home and garden, which she had previously loved. We made great efforts to restore her home and garden to their former glory, and we also installed a ramp to make them more accessible for her. Restoring her home and garden for her enjoyment became an important part of ensuring her well-being.
Working closely with her carers and family, we ensured her finances were managed in line with her past wishes and current comfort. This included maintaining her charitable donations at an appropriate level and ensuring that she could continue to enjoy familiar routines.
Importantly, decisions were not made in isolation. Regular reviews ensured that any changes in her condition or care needs were reflected in the management of her affairs. Eventually, her needs became such that it was no longer viable for her to live alone, and so she was moved to a local care home. However, the carers who previously assisted her were retained, and they would take her home every day so that she could still enjoy her home and garden.
Why make an LPA?
This situation highlights the importance of planning. If our client had made a Lasting Power of Attorney (LPA) while she had capacity, she would have had greater control over who would have made important decisions on her behalf.
Without an LPA, families often face more complex and time-consuming processes, whilst the overburdened Court of Protection makes an order at what is already a difficult time. Fortunately for our client, once we received the order, our team put her needs first and ensured the plans were tailored to her wishes and preferences.
Decision-making and autonomy
One of the key principles underpinning the Mental Capacity Act 2005 is that individuals should be supported to make their own decisions wherever possible. A diagnosis of dementia does not mean that a person has lost capacity, and it is a critical principle of the Act that an unwise decision is not necessarily an incapacitated one. Capacity is also “decision specific”, so a person may be able to make certain decisions, such as daily expenditure, but not more complex ones, such as purchasing a house.
For professionals working in this area, the challenge is always to balance protection with autonomy. We must ensure that those we support are not exposed to undue risk, while also respecting their right to live in accordance with their own values and preferences.
Raising awareness and reducing stigma
Dementia Action Week is not only about recognising the clinical aspects of the condition, but also about recognising that each person has their own story to tell and a unique lived experience of dementia.
Legal processes such as applying to the Court of Protection for a deputyship can feel impersonal or daunting. However, when approached with sensitivity and a person-centred focus, they play a vital role in safeguarding individuals whilst preserving their wishes.
At Kingsley Napley, we are committed to protecting what matters most, supporting people living with dementia to retain their independence, dignity and sense of self.
If you or someone close to you needs support, Kingsley Napley is here to help. Please get in touch here.
About the author
Jemma is a Partner in the Private Client team specialising in Court of Protection work. She joined Kingsley Napley in January 2021. Jemma’s practice involves supporting professional and lay deputies for individuals who do not have capacity to manage their property and financial affairs.
