Care Partnering, Challenges & Solutions, Life & Living, Real life

7 simple dementia care partner needs

I asked the care partners in one of the Facebook groups I belong to a simple question:

What would help reduce your stress, improve your ability to provide care to your person living with dementia and make your life and their life easier?

It turns out they don’t need anything extraordinary in the whole scheme of things. Simple stuff is what they need. Most of all, they need help and support. They need friends and family to chip in. They also said they don’t want to be alone, forgotten, isolated or destitute. It’s not complicated.

Here’s a sample from the answers I got:

Someone who is trained AND totally understands dementia to stay with my dad from time to time.

Someone I trust to agree a regular standing arrangement to come over and stay with Mom so my husband and I can get away and have some sort of love life. Even if only for a weekend.

His family and friends to come and see him or at least to call him like they use to.

Some way of reducing the isolation in my life, so that I could spend some time in the real world with real, not invisible, people.

Short list: One person that I could call and say “I need help with mom” and they would come. No explanation needed. Nobody wants to beg for help. Visitors to improve her mood, a much needed break at least once a week.

Affordable care of any kind would help. Friends and family who don’t toss me, the caregiver, by the wayside. Perspectives on communication or how to communicate with a loved one who does not listen, does not pay attention, and does not think about what they are doing. I’ve tried signs, alarms, phone reminders. Someone to talk to that will just let me talk or vent. The isolation is unnerving.

A thank you now and again. From anyone. Anyone at all.

Are you the “someone” a dementia care partner somewhere needs? If you can help, even a little bit, please do.

Thank you.

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Advocacy, Life & Living, Resources

8 principles of high-quality care and support that people who live with dementia and people who don’t live with dementia all deserve

Who knows better what they need to live with a disease, a condition, a problem, a challenge, a difference than those who live with it?

Nobody, that’s who.

The World Dementia Council (WDC) is an international charity. It consists of 24 senior experts and leaders drawn from research, academia, industry and NGOs in high-, low-, and middle-income countries, and most important, it includes two leaders with a personal dementia diagnosis.

In May 2017, the WDC published a Global Care Statement Calling For More Care and Support For People Living With Dementia. This is what it said in part:

“All persons affected by dementia – those living with the diseases that cause it, their care partners, and their family and friends – have a right to receive the highest quality care and support possible to meet their needs. They have the human right to be treated with dignity and respect. And they are entitled to full and effective participation and inclusion in society. These rights transcend national boundaries and cultures.”

The statement included eight principles of high-quality care and support, the short forms of which are listed below, and which, in my view, apply to everyone, not just people who live with dementia. I’ve put brackets around the bits that could be taken out to make this principles universally applicable:

1) Individuals receive a timely and accurate diagnosis; and are told of that diagnosis
2) People [living with dementia] are entitled to respect and dignity
3) Communities are inclusive of people [living with dementia]
4) Care is person- and relationship-centered
5) The provision of person-centered care is based on continuous assessment and individualized care planning
6) People [living with dementia and their care partners]  are involved as active participants in [their own] care planning
7) Medical and care professionals have adequate knowledge [of all aspects of dementia]
8) Care coordination and collaboration occurs between all care providers

Equally important is the WDC statement below that calls for collaboration between all those involved in care whether they be “professionals,” family care partners, or other care providers. I particularly like the fact that monitoring and evaluating care and support is specifically mentioned as I feel this is the only way to stop the neglect and abuse of people who live with dementia in their own homes as well as in long-term care facilities.

See the WDC care statement and a more detailed explanation of each of the eight principles here.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided. Yes. All of that makes sense to me.

Bravo WDC for identifying what people who live with dementia deserve, and what the rest of us who don’t yet live with dementia deserve as well!

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Advocacy, Life & Living, Spirituality, Toward better care

rethinking the pathological myth of normal

41846058 - crazy expressive trendy dj girl in bright clothes, headphones and bright dreadlocks. disco, party. bright fashion.

I’ve never done well in the boxes society and others wish to confine me. I like to colour outside the lines. I hate rules and policies. I’m a true Aquarian: independent, unconventional and thirsty for knowledge and discovery. That may be why I have found it relatively easy to understand and accept the behavioural expressions of people who live with dementia as “normal,” and to embrace the work of innovative thinkers such as Dr. Gabor Maté.

In Maté’s view, normalcy is a continuum on which we all exhibit traits and behaviour that have traditionally been labeled as “normal” and “abnormal.” Behaviour, he says is “contextual and cultural. Disease is not an isolated phenomenon of the individual, it’s a culturally constructed paradigm.”

I would suggest that part of the stigma associated with Alzheimer’s disease and other dementias arises from the limited ways in which arbitrarily define what “normal” is. Expanding our universe to create space for behaviour to which we may not be accustomed, but which is not inherently better or worse than what culture specifies, will, I think, result in a more inclusive, rich and diverse world.

I also love Maté’s take on the impact our materialistic society has on the way we value, or more to the point, devalue the elderly and other who don’t feed into the production/consumption frenzy on which western society has increasingly come to manifest.

“What we value is not who people are, but what they produce or what they consume,” Maté says. “And the people who neither consume nor produce are ostracized, shunted aside and totally devalued. Hence the rejection of old people, because they no longer produce and they’re not rich enough to consume a lot either. So the very nature of this materialistic society dictates or generates and promotes the separation that from ourselves.”

I suggest it also separates us from each other. Food for thought.

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Care Partnering, Hope, Love

13+ needs we share with people who live with dementia

naomi feil & gladys

“In order to empathize with old-old people, we need to understand the complex interweaving of physical deterioration and developmental needs,” writes Naomi Feil in The Validation Breakthrough.

Like Feil, who has more than 30 years experience working with the elderly, I’ve found that “old disoriented people have an intuitive wisdom, a basic humanity that we all share. Behind their disorientation lies a human knowing. I have witnessed this “human knowing” in people with dementia, even when they find it difficult to articulate their thoughts. I call it “intuitive clairvoyance.”

It shouldn’t come as a surprise that old people have the same needs all of us do. But somehow we lose sight of their humanity and their right to dignity. We treat them like children. We talk about them like they are invisible even when they’re right beside us. We tell them what to do. We restrain them physically and chemically. We ignore and isolate them. We fail to provide them the things they need to live full and productive lives to the end. What a shame!

We must use our failures (as Feil herself has) to develop a deeper understanding as well as better tools, techniques, and ways of caring for the elderly and people with dementia. I believe we must change the way we see and support the elderly, in particular people who have dementia. As they become less able to do so themselves, it’s our responsibility to help them get their needs met in the final part of their journey.

Fell suggests “old-old” people and people with dementia have psychological and social needs just like the rest of us. I would go further and say these are rights, not just needs. Everyone has the right to the needs Feil’s describes:

  1. Resolve unfinished issues, in order to die in peace.
  2. Live in peace.
  3. Restore a sense of equilibrium when aspects of self fail (e.g. sight, hearing, mobility, and memory).
  4. Make sense out of unbearable reality: find a place that feels comfortable, where one feels in order or in harmony and where relationships are familiar.
  5. Be recognized and have status identity and self-worth.
  6. Be useful and productive.
  7. Be listened to and respected.
  8. Express feelings and be heard
  9. Be loved and feel a sense of belonging; have human contact.
  10. Be nurtured, feel safe and secure, rather than immobilized and restrained.
  11. Have all five senses stimulated touch, sight, sound, smell, taste, and be allowed to express one’s sexuality.
  12. Reduce pain and discomfort.

I would add:

13. live joyfully, surrounded by laughter, love, music, fun and opportunities to connect with others in a meaningful way.

Most important Feil says, is that despite disorientation, the old-old and people with dementia must be given the opportunity to fulfill the “universal need to belong, to find identity, and to express themselves.”

I couldn’t agree more, and it’s our job as care partners to ensure that happens.

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

my mom still counts and she deserves better

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