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Dementia care: What is an advance statement?

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Living with dementia can be challenging and upsetting, as aspects of memory become lost forever leaving your loved one feeling confused and perhaps frightened.

In the earliest stages of the disease, your relative is likely to worry about what will happen to them as the condition progresses, fearing that they will lose all autonomy over their lives, with no say on where and how they live in the future.


Who can make an Advance Statement?

Advance Statements were developed earlier this century to allow people to set out their wishes about their lifestyle should they become mentally incapacitated in the future.

Anyone can make an Advance Statement, which their relatives and health professionals should do their best to adhere to in the event that the originator of the statement becomes unable to express their wishes in the future.

Advance Statements are particularly important for anyone diagnosed with dementia, as it allows them to set out their likes and dislikes, and to provide carers with a good indication of how they would like to be treated and what they would like to happen as the condition takes hold.

The Advance Statement can only be made by the person to whom it relates, so you cannot make one on behalf of your elderly relative if their condition is so severe that they are unable to express themselves satisfactorily.

What information can an Advance Statement contain?

Your loved one should be encouraged to consider their lifestyle and how it may change in the future. They can then set out their preferred options regarding where they might live, what foods they enjoy, and the sorts of activities that they would like to stay involved with.

Some examples that your relative might like to include in their statement include:

  • I would prefer to remain in my own home rather than go into a care home
  • I would like to maintain a vegetarian diet
  • I would like to spend time in the fresh air every day
  • I would prefer any future carers to be female
  • I would like to keep attending my local church services
  • I would like a nightlight as I don’t like the dark
  • I wish to continue to enjoy watching nature programmes on the television

Is the Advance Statement legally binding?

There is no legal requirement to set out an Advance Statement in writing, but obviously, it makes more sense to do so, as everyone involved in your loved one’s future care needs can then be supplied with a copy.

Social workers, medical staff and other members of the family can all be given a copy of the statement so that everyone knows what your loved one’s wishes are regarding their future care.

It won’t always be possible to conform to every aspect of your loved one’s wishes. For example, they may have stated that they do not wish to go into residential care, but circumstances may mean that this is something that they must eventually do, perhaps due to failing health or other conditions that make care at home impossible.

What our customers say

“It is reassuring to know that my father is being cared for by someone who understands his needs and his dementia symptoms.”

Patricia, Norwich

Refusal of treatment

Your loved one can also make an Advance Statement about future medical treatment, setting out conditions under which they wish to refuse any further medical intervention, such as refusing a blood test on religious grounds, or declining future chemotherapy for recurring cancer.

Where a statement is refusing treatment, it’s imperative to ensure that this is written down and signed, along with confirmation that your loved one fully understands the implications of making such a decision.

Medical staff are obliged to abide by this decision except under exceptional circumstances, such as the development of a new and more efficient treatment that the individual had not been aware of, or if they believe that your relative did not have the mental capacity to make such a decision in the first place.

Power of Attorney

Securing Power of Attorney is an essential step in ensuring that you can carry out your relative’s wishes once they are unable to make their own decisions known.

It is always recommended that discussion of Power of Attorney should take place as soon as possible following a diagnosis of dementia, as this minimises problems later on when the disease has progressed to the point that they are no longer competent to make such a decision.

Once you have been granted Power of Attorney, you can make important decisions regarding their elderly care needs.

As an example, you may feel that companion care would be beneficial to keep them entertained and enjoying their life to the full, or you may need to decide whether they require more specialised dementia care, and what form that should take, making your decisions based on their Advance Statement.

Many families find that they have left the discussion about Power of Attorney too late, broaching the subject only once their loved one’s disease has progressed too far to enable them to make such a decision.

In these cases, the question of Attorney would need to be passed on to a legal team, causing extra expense and delaying the possibility of making appropriate decisions for your relative’s needs.