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Связанные одной болезнью. Почему родным больных деменцией нужна помощь

Связанные одной болезнью. Почему родным больных деменцией нужна помощь?

Групповая работа хороша тем, что люди выходят из кокона одиночества.

На учете в областной психиатрической больнице региона состоят две с половиной тысячи больных деменцией. Большинство из них — пожилые люди. Старость сама по себе печальна, но когда к морщинам и седине добавляются проблемы с ментальным здоровьем, человек становится обузой для родных. И им нужна не меньшая помощь и поддержка, почему, рассказала психолог проекта «Родные люди» Анна Харитонова.

Восстановить нарушенные функции мозга помогает упорная тонкая работа.

Tips for Everyday Care for People With Dementia

Early on in Alzheimer’s and related dementias, people experience changes in thinking, remembering, and reasoning in a way that affects daily life and activities. Eventually, people with these diseases will need more help with simple, everyday tasks. This may include bathing, grooming, and dressing. It may be upsetting to the person to need help with such personal activities. Here are a few tips to consider early on and as the disease progresses:

  • Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
  • Help the person write down to-do lists, appointments, and events in a notebook or calendar.
  • Plan activities that the person enjoys and try to do them at the same time each day.
  • Consider a system or reminders for helping those who must take medications regularly.
  • When dressing or bathing, allow the person to do as much as possible.
  • Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
  • Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
  • Be gentle and respectful. Tell the person what you are going to do, step by step while you help them bathe or get dressed.
  • Serve meals in a consistent, familiar place and give the person enough time to eat.

The first visit can be difficult

Some families might be worried about their first visit in several months to a person living with dementia.

They might be concerned their loved one has gotten worse, or scared they won’t recognise them.

But it may help to think of visits as providing really important mental stimulation and human connection for your loved one, even though visits might be difficult emotionally for you.

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Introduce yourself: “Hi Dad, it’s Ali”, if it looks like your loved one can’t quite place who you are or your name.

Read their reactions to you. If they need time to warm up to you (which might be disappointing if you are close), chat with someone else who is there. The person might enjoy your company even if they aren’t actively participating in the conversation at first.

Elderly lady doing crafts with a carer, outside at a table

Then invite them to participate in the conversation by asking them their opinion: “How is the dog going?” or “I’m looking forward to going to the hairdresser, how about you?”.

Prepare an activity to do together based on their interests. You could walk in the garden, browse a magazine about the royal family, sing along to a favourite album.

If it’s a noisy gathering, find a quiet spot for one-on-one conversation, as the person may have trouble focusing when there are several people talking at once.

Dementia

The PFA is committed to giving footballing families living with dementia the support they need, and making sure they are not left alone and without help.

Dawn Astle, daughter of Jeff Astle, and Rachel Walden, daughter of Rod Taylor, have joined the PFA as Family Advisors, to ensure those caring for former players with dementia can easily access helpful support and information.

Our PFA Family Advisors will work closely with you, and various dementia support specialists, to build a strong network that gives you and your family member the emotional, practical and financial support to face dementia with dignity.

Navigating life after a dementia diagnosis can feel isolating, but both Rachel and Dawn come from football families and have lived experience caring for fathers who had developed different forms of dementia. With this unique insight, they are well placed to help you process a difficult diagnosis and offer an understanding ear. They’ll also be able to signpost support that can otherwise be difficult to find and help you access a wide range of emotional and practical assistance from the PFA Charity.

The support provided to each family will be determined by the stage of dementia your family member is experiencing and tailored to accommodate your individual circumstances. Your Family Advisor will spend time talking with you to gain a clear picture of your needs, so we can understand how best to support you and your family.

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Then, either Dawn or Rachel will talk you through the variety of options available and offer support as you come to a decision that works for your family. All interactions with your family advisor will be confidential, but to access the right help, we might need to ask for permission to share some details about your personal situation with others.

Nick Cusack, PFA

Support For Early-Stage Dementia

If you’re caring for a former player who is recently diagnosed or living with an early stage of dementia, we can offer benefits advice as well as emotional support and counselling, which many other footballing families living with dementia have found helpful. We may also be able to connect you with social support services in your local area, to help you meet people who share your experience.

Support For Later-Stage Dementia

Support with respite or care in the home may be more useful for the families and carers of former players at a later stage of dementia. If managing your family member has become more difficult at home, you’ll be able to talk through all your options with your Family Advisor, who will work to simplify support access as much as possible.

The Process

Any family looking for support from the PFA while caring for a former player with dementia will be taken through the following steps:

• After you contact the PFA, our Family Advisors will get in touch with you for an informal chat over the phone about your situation and what support we can provide.

• They will arrange a time to assess your needs, signpost other support services you are also eligible for and explain the application process when accessing PFA/PFA Charity support.

• They will then assist you with applications, and support you with updates and regular check-ins throughout the process.

• If your application is for financial support, you will be asked to fill out a form to access the Benevolent Fund. This funding is provided via the PFA Charity, and your application will include questions about the player’s financial status and require proof of diagnosis. We understand this may feel intrusive, but it is not intended to be insensitive – these questions are simply a compliance requirement under charity law.

Support Services Offered

The PFA Charity currently offers a variety of grants to support former players with dementia. This includes the following:

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Welfare Rights Service

Helpful for families living with dementia at any stage, Independent Benefits Advisor, Brian Snaith is an expert in welfare rights and adult social care. He works closely with families to establish whether the players are receiving all the correct state support and benefits they are eligible for.

This service is not designed to replace available PFA support, but to ensure families are aware of all the assistance that may be useful. Brian will provide direct advice and administrative support to players/families/carers and work alongside the Family Advisors to alleviate some of the pressure the family may be facing.

Counselling

The wellbeing services we offer to all current and former players are also available to the families and carers of players living with dementia.

If you feel counselling would be beneficial for you, please let Dawn or Rachel know, and they can refer you to the PFA’s Wellbeing team. Someone from the team will be in contact to assess what type of wellbeing support you’d most benefit from, and then connect you with an independent, qualified counsellor for free, confidential advice.

Some of our counsellors have specific experience with dementia and can also offer anticipatory grief counselling. Absolutely no information expressed during these counselling sessions will be shared with the PFA.

Home Adaptions

As the player’s condition progresses, we can offer financial assistance to make their home more safely accessible to meet their changing needs. This can include home modifications, installing specialist equipment or any other specific requirements that the player’s needs dictate.

Home Care

Any assistance for home care will be strictly guided by individual needs and will be dependent on financial circumstances on a case-by-case basis. This could include weekly support visits to give the primary carer a break, social visits from former player associations or in more extreme cases daily support to help with the player’s day-to-day needs.

Respite Care

Similarly, any applications for respite care support will be determined by the needs of the player and their family or carer. Every family will be different, but as an example, respite care could begin with one-week stints every month for three months, after which the needs will be reassessed and reviewed.

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Additional Needs

Your Family Advisor will be happy to discuss any other specific or additional support you or your family might require, and work with the PFA to identify how to meet those needs. All additional requests will be considered on a case-by-case basis, and decisions will depend on individual circumstances.

The wellbeing of current and former professional footballers is our utmost priority. If you are caring for a former player with dementia, you are not alone. The PFA and our dedicated Family Advisors are here to offer support. Please get in touch with us here.

RAMPING UP DEMENTIA-FRIENDLY COMMUNITIES

One step in this direction has been Kampung Admiralty, the first integrated community for the elderly where they can live in their own flats and have access to medical care for a fee.

It is also heartening to see that there are outreach and education efforts within the Woodlands community to help seniors with dementia who are lost. This includes training volunteers and SMRT staff.

For PWDs living alone or with their spouses, integrated communities like Kampung Admiralty can fill the gap in the meantime.

Поддержите нас

Мы не сможем поддерживать фонды, лоббировать законы и решать социальные проблемы без вашей помощи. Вы — наша главная ценность. И мы будем благодарны, если вы оформите в пользу «Нужна помощь» регулярное пожертвование и встанете рядом с нами.

Исключительные права на фото- и иные материалы принадлежат авторам. Любое размещение материалов на сторонних ресурсах необходимо согласовывать с правообладателями.

По всем вопросам обращайтесь на [email protected]

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  1. Значение настоящей публичной оферты
    1. Настоящая публичная оферта («Оферта») является предложением Благотворительного фонда помощи социально-незащищенным гражданам «Нужна помощь» («Фонд»), реквизиты которого указаны в разделе 5 Оферты, заключить с любым лицом, кто отзовется на Оферту («Донором»), договор пожертвования («Договор») на реализацию уставных целей Фонда, на условиях, предусмотренных ниже.
    2. Оферта является публичной офертой в соответствии с пунктом 2 статьи 437 Гражданского кодекса Российской Федерации.
    3. Оферта вступает в силу со дня, следующего за днем размещения ее на Сайте в сети Интернет: takiedela.ru, sluchaem.ru, 365.nuzhnapomosh.ru, beznadege.net, nuzhnapomosh.ru, https://nuzhnapomosh.ru/donate/.
    4. Оферта действует бессрочно. Фонд вправе отменить Оферту в любое время без объяснения причин.
    5. В Оферту могут быть внесены изменения и дополнения, которые вступают в силу со дня, следующего за днем их размещения на Сайте Фонда.
    6. Недействительность одного или нескольких условий Оферты не влечет недействительности всех остальных условий Оферты.
    7. Местом размещения Оферты считается город Москва, Российская Федерация.
    1. Сумма пожертвования: сумма пожертвования определяется Донором.
    2. Назначение пожертвования: реализация уставных целей Фонда.
    1. Договор заключается путем акцепта Оферты Донором.
    2. Оферта может быть акцептована Донором любым из следующих способов:
      1. путем перечисления Донором денежных средств в пользу Фонда платежным поручением по реквизитам, указанным в разделе 5 Оферты, с указанием назначения пожертвования «пожертвование на Благотворительную программу “Нужна помощь.ру», а также с использованием платежных терминалов, пластиковых карт, электронных платежных систем и других средств и систем, позволяющих Донору перечислить Фонду денежные средства;
        При получении безадресного пожертвования на расчетный счет по реквизитам, Фонд самостоятельно конкретизирует его использование, исходя из статей бюджета, утвержденных Советом фонда, являющихся неотъемлемой частью деятельности Фонда либо направляет их на расходы на административные нужды Фонда в соответствии с Федеральным законом №135 от 11.08.1995 г. «О благотворительной деятельности и добровольчестве (волонтерстве)».
      2. путем помещения наличных денежных средств (банкнот или монет) в ящики (короба) для сбора пожертвований, установленные Фондом или третьими лицами от имени и в интересах Фонда в общественных и иных местах.
      1. Совершая действия, предусмотренные данной Офертой, Донор подтверждает, что ознакомлен с условиями и текстом настоящей Оферты, уставными целями деятельности Фонда, осознает значение своих действий, имеет полное право на их совершение и полностью принимает условия настоящей Оферты.
      2. Донор имеет право на получение информации об использовании пожертвования. Для реализации указанного права Фонд размещает на сайте:
        1. информацию о суммах пожертвований, полученных Фондом, в том числе о суммах пожертвований, полученных для оказания Фондом помощи каждому конкретному проекту;
        2. отчет о целевом использовании полученных пожертвований, в том числе для оказания Фондом помощи каждому конкретному проекту;
        3. отчет об использовании пожертвований в случае перемены целей, на которые направляется пожертвование. Донор, не согласившийся с переменой цели финансирования, вправе в течение 14 календарных дней после публикации указанной информации потребовать в письменной форме возврата денег.

        Благотворительный фонд помощи социально-незащищенным гражданам «Нужна помощь»

        Адрес: 119270, г. Москва, Лужнецкая набережная, д. 2/4, стр. 16, помещение 405
        ИНН: 9710001171
        КПП: 770401001
        ОГРН: 1157700014053
        р/с 40703810701270000111
        в ТОЧКА ПАО БАНКА «ФК ОТКРЫТИЕ»
        к/с 30101810845250000999
        БИК 044525999

        Благотворительного фонда помощи социально-незащищенным гражданам «Нужна помощь» в отношении обработки персональных данных и сведения о реализуемых требованиях к защите персональных данных

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