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'Dementia shouldn't be a barrier to living well'

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Can living well with dementia actually be achieved? I know it can, but only if you allow the person to actually live with dementia.

elaine farrer

A dementia diagnosis is shattering, but it doesn’t mean a person’s life has come to an end. Over time things will of course change. But these changes don’t have to be negative on all fronts. 

As time progresses, it is more likely that someone living with a diagnosis of dementia will need the services provided by a care home or a care-at-home package. Exactly when will depend on the individual.

There are no hard and fast rules; it’s all about the individual and their personal circumstances.

The range of care available is of course vast: small or large care home, new build, old building, dedicated dementia community, or mixed with the more traditional nursing home clients.

Perhaps there is even the option of staying at home supported by a loved one or care support package? These are just some of the decisions that families need to make.

As well as the practical side of this decision, there is also a huge emotional element and the cost of care. Who pays – do I have to pay? Care isn’t cheap to provide nor cheap to buy. Financial considerations will typically add stress at what is already a highly emotive time. Finding out about care options and their cost is a minefield, and one that needs to be carefully navigated.

A move into care often results from sudden illness or injury, or a change in personal circumstances. But something people will always ask themselves is whether the person can really live well in a setting that may be not theirs or the family home. The answer is yes.

Care homes dedicated to dementia are not about routine and control – a set time to get up, eat and go to bed and what to do doing during the day. They should offer choice and having choice allows for living well on so many levels.

Responsive, on-hand, dedicated teams have additional training to further understand the complexities of dementia. They also have an empathy and understanding. But most importantly, to enable a resident to live well, the team needs to exercise a ‘can do’ approach to life.

Wrapping a person with dementia in cotton wool and constantly telling they can’t do things isn’t what living with dementia is all about. Likewise, knowing the principles of the Mental Capacity Act is not enough to allow people living with dementia to live well.

To create a culture where calculated risks are the norm is what we should all be aiming for.

If going swimming, horse riding or doing a routine activity of cutting up vegetables with a knife is what we need to facilitate to promote living well, who are we to say no? It all comes back to choice and considering the needs of the individual.

If, as a consequence of living with dementia, a person’s time of day becomes disrupted, why insist it is time for them to go to bed because it’s night time? If they are up and awake and it’s night time, leave them be and let them sleep when they are ready.

If they want to walk and not sit, don’t force them into a chair and make them sit still. If they don’t want to eat now even though it’s lunchtime, let them eat later. If they want to walk, let them. If they want to join in an activity, let them – and if they don’t, then leave them be.

We do need to be mindful that there are huge pressures on providers with fee constraints up and down the country and providing great dementia care does have a cost, but not everything has a price tag.

Creating a positive ‘can do’ culture and simply ‘being there’ help to provide many key elements of what living well with dementia is all about. It’s not about big expensive gestures, it’s the little things that matter. It’s about the individual.

Providing a safe environment is important. But an environment which stops anyone really living with dementia – and living life to the full – is simply not living well with dementia.

We all need to take every opportunity to make every day a fulfilled day and dementia shouldn’t be a barrier to living well.

Elaine Farrer is operations director at Colten Care


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